My MS Story (Part 5)

I’m always cold. For as long as I can remember, I’ve always felt cold. Except for when I’ve been boiling hot of course. I’ve struggled to regulate my body temperature for most of my life.

Sometimes when I’m exercising, I completely overheat, particularly on a hot day. My personal training sessions with Sam are only 30 minutes. In my four years training with her, on two occasions I’ve had to stop at 20 minutes because I’m seeing stars and want to throw up. Not like I’ve over-exerted myself. No. This is different.

Now, in the last 18 months or so, the night sweats have started. The worst thing about these is that I feel freezing, and all the while, I’m sweating buckets. I’ve always struggled with regulating my body temperature though. It’s just one of those things. Nothing to read too much in to.

The day I got told that I might have MS (I’ll tell this story properly in another blog), I was asked whether I suffer from mood swings. Well, at the time I answered with a definite “No!” What woman wants to be accused of mood swings?

Upon reflection however, this is definitely something that is a bit of a theme with me. I’m a ranter. I’m also a crier. I cry in both sadness, and with laughter. Sometimes when I cry with laughter I get really confused and start sobbing with sadness. It’s a strange experience for both me, and anyone that witnesses it. I’m pretty sure Dave thought I was a complete fruit loop the first time I did it in front of him.

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The trouble is, it’s unlikely we’ll ever define that that is a result of MS. It could just be “Jo”. I’ve accepted that as “Jo” for the first 31 years of my life, so it doesn’t matter what the answer is, but needless to say, I’ll probably always wonder.

The “window-shelfy thing” is another example that sticks in my mind of things that weren’t quite “right” with me. I have always been academic. I was a straight A student, I have an upper second class honour law degree, and I passed my Bar exams with a Very Competent. I’m good with words. I have a great memory. I have awesome recall. Or do I?

I had to send an email to some work colleagues recently which involved talking about the “window sill”. Thanks to Kat I will never forget that word again! Much to their amusement, I called it the “window-shelfy thing” because for love nor money could I recall the word. I know what you’re thinking, because I thought it too:

“I’m 31, there’s no more room left to keep words you don’t use often”

“It’s not that common a word!”

“Other people forget words all the time!”

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But I don’t forget words. It’s not something that I do. It’s funny, because of all the random symptoms (not relapses) I explained away pre-diagnosis, this is perhaps the one that distressed me the most. I’m still trying to work out why. Maybe it’s because I’ve always prided myself on being “academic”, and this kind of thing coming so easily.

Like with my emotions, there’s a very real possibility that all of my excuses for this particular “brain block” are absolutely correct. Equally, I can’t ignore the fact that MS can affect cognitive abilities, like recall of words.

The more I write these blogs, the more I see how many things with my body haven’t been right for a very long time. These symptoms haven’t just appeared as a result of my diagnosis. I didn’t not feel them before. I just excused them away, without any medical or scientific justification for years. My excuses and explanations have been taken away from me though.

I’m sure as you have read this, and Part 4 of my story, you’ve wondered what the big fuss is. None of these things are huge (apart from maybe the MS hug and the fatigue is tough) but they’re there. Hanging over me, everyday. You’d be right to wonder what the big deal is. But the big deal is, that all these little symptoms mean that every so often a relapse will happen, and I really will find life tough when that happens.

Equally, all these little symptoms are nothing more than a mild irritant at the moment but they might get worse. They might become more than just irritating. But they might not. I don’t know. The nature of MS is that it’s that unpredictable. I see little point in worrying about that though – it’s out of my control.

If there’s one thing I would love people to take away from my blogs, it’s to not ignore your body when things don’t seem right. There is absolutely no harm in getting it checked out. I don’t want you all to turn into hypochondriacs, but if things don’t seem right, don’t ignore it!

The trouble is, all these little symptoms didn’t seem serious. They all came along over such a long period of time, that I was used to them and just accepted them.

But some things just cannot be explained away.

Like going blind.

Five Minutes in the Morning

A few months ago I was in Sainsbury’s and picked up a book. It’s called “Five Minutes in the Morning – A Focus Journal”.

It’s usually priced at £10 but I was chuffed that it was only £4 (oh the joy of the January sale!)

The idea is, you take five minutes in the morning (duh!) to take stock of the day. Check in with yourself and how you’re feeling. Set some intentions for the day.

I’ve not used it really – it’s such a beautiful book, that I didn’t really want to write in it. I do like “workbook” style things though. I like having something to do.

Now even though this is designed for in the morning, I think I can get so much from this at any time of day.

So this evening I completed the first activity.

An exercise to start writing.

I was tasked with spending five minutes just writing about how I would introduce myself to somebody, and here’s what I wrote:

Hi, I’m Joanna, but most people call me Jo. Except Dave. He calls me Joey. Dave is my other half and he very much completes me. We’ve been together for five years and have a little boxer doggy called Poppy who’s three.

In my spare time I enjoy reading and writing (I have a blog), and going to the gym. I’m a bit of a fadder, but that just means that I never get too bored!

In my spare time, I work for a big energy company in learning and development. I’ve done it for 13 years and genuinely love it!

I’m originally from Essex, but moved to Wigan 8 years ago, which is the best thing I’ve ever done.

I love letters and I currently have six pen pals, and the list is growing.”

I reflected on what I’d written. I feel it’s a fair insight into me but I’m also shocked by what I’d missed out. My love for gin, herbal tea and coffee is missing. Happily, I don’t let my recent diagnosis define me; I felt no need to mention that in my introduction.

After my first experience with this book, I’m definitely going to start using it more. If you’re interested, I managed to get another couple of them on Amazon for £4 – they’re easy to get your hands on. I gifted one to Kate as she shares a love for writing and I got the feeling she’d enjoy using a similar kind of book.

I think it’ll be really nice to dip in and out of occasionally, and give me a little pre-blog warm up or inspiration!

Have a go at this activity yourself – I’d love to read your five minute introductions.

My MS Story (Part 4)

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Ever since my “dizzy” episodes, my balance has completely died a death.

I’m a girl that could stand in the tree position in yoga for at least 10 minutes. I remember being in a ballet class at around 14 and being challenged to how long I could stay stood on tip toe (I won that contest!)

But now, I am a girl who goes out for a walk and might fall over 5 times. I am a girl that goes to a Zumba class and falls over her own feet. I go to step aerobics and trip over the step and fall spectacularly on my arse. And I’m a girl who can’t walk 10 feet over “there” without clinging onto Dave for dear life because I’ll probably have some kind of misplacement of my feet that will probably end in a face plant! In fact, my balance is so bad, I can be stood and almost go flying for no apparent reason at all. I literally struggle to stay stood on my own two feet.

I have this noise that I make when I have a wobble that I can’t really explain. But Dave probably hears it more times than you can count on one hand over a weekend. It’s just a kind of “uuuhhhhh” sound and it’s not very flattering!

Along with a distinct lack of balance these days, and occasional lapses in coordination, somewhere along the line I started having phases where I slur my words. This is mostly noticeable at work when I’m training. I have days where the words just don’t come out in the right order or without all joining up.

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Probably about 18 months ago, I mentioned to Sam that I was struggling to really take a deep breath. I was yawning but struggling to hit that sweet spot. I felt like someone had a grip of me around my breast bone, and was squeezing. I just couldn’t quite catch my breath properly.

She’d heard of this being a problem in people who had a sensitivity to caffeine, so she suggested that as an avid coffee drinker, I should switch to decaf. I did this immediately – I don’t drink coffee for the effects, it doesn’t stop me being knackered so it wasn’t an issue for me.

Within a day or two, the squeezing sensation was gone. Result! Problem solved! I trickled back into the habit of caffeine though within a couple of months. And guess what? Sensation re-appeared. So what did I do? Obviously I knocked the caffeine on the head again.

And it went again.

But I didn’t go back to caffeine this time and it still happened. Of course I did nothing with it though. It was just something that happened sometimes, and maybe I was just THAT knackered that I struggled to get a proper satisfying yawn. No amount of yawning was going to satisfy me. Yes. That was it.

And then I got told that I might have MS.

As any normal human being, I did the thing where you go and look up all the symptoms, particularly as I didn’t really have a clue what it was.

The list is endless.

I was glancing down the list and so many of the weird “glitches” with my body that I’d put down to getting older, putting on weight and working too hard in the gym were being given a “proper” answer. As I read down the list, I saw it. The MS hug.

“The MS hug is a symptom of multiple sclerosis where you feel as if you have a tight band around your chest or ribs, or it can be pressure on just one side of your torso. Some people find that it is painful to breathe. The feeling can range from annoying to very painful.”

So that’s my so-called caffeine problem explained – BRING ON THE EXTRA SHOTS IN MY LATTE!

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On the subject of caffeine, I mentioned before that it does nothing for me and perhaps that’s another link in to MS. The fatigue can be like you’ve never imagined or experienced. When I am really fatigued, I suffer from real lapses in concentration too. I’ll forget what I’m talking about mid-sentence. I don’t mean just losing my thread. I mean I literally forget what I just said, who I am and where I am.  I struggle to hold focus in conversations with people. I zone out. I know I’m doing it, but I struggle to find my way back.

The explanation for this come as somewhat a relief. I felt so ignorant for how I behaved sometimes. I still do, but it comforts me that there is at least a reason for it. I don’t see it as an excuse though. For me, it’s something in my behaviour that I need to learn to be conscious of, and to manage it. The “how I do that” is still unanswered and something I’m exploring with myself.

I could go on and on about all my possible symptoms of MS, and how I excused them until I was diagnosed. I’m sure you’re noticing that I had all the excuses. Now the thing is, those so-called excuses still might ACTUALLY be the reality.

The trouble with MS, and the thing that I’m most struggling to come to terms with, is that a lot of things that are symptoms, might just be how I am anyway. Some things might just be who Jo is. Some might be Jo with MS.

What a minefield eh?!

The thing is, it doesn’t really matter. I know that. It’s just actually accepting that that’s challenging. There are some symptoms that are unmistakably MS though, and it’s important to note that these things aren’t a permanent fixture. They go through waves of severity. I might just wake up with it one morning and by midday they’re not even there anymore. Other days, they might be there, but so insignificant, I’m not even aware of it’s presence.

 

 

 

My MS Story (Part 3).

The next time I got a taste of a relapse, though I didn’t know it at the time, was around about July 2016.

I was in the midst of my Body Coach phase. I was in Cycle 2, which involved GVT, or German Volume Training. On this particular day, I was squatting. 10 sets of 10 at 20kg was what was ordered by Mr Wicks, and that I was going to do.

I was hitting it pretty comfortably until my 8th set. My legs just went to jelly. I managed to complete my 10 sets but there wasn’t a hope in hell that I’d be following up with 10 sets of 10 walking lunges. Nu-uh. Not a chance.

As I walked out of the gym, I was acutely aware that my legs felt like they were going to give way underneath me, and I seemed to have lost all control over my left leg. It was flapping all over the place like a flag in the wind.

“It’s ok,” I told myself. “10 for 10 is a pretty tough target and your range was probably about 80% there so you’ve probably just over exerted yourself.”

In an effort to right my problems with my leg, I booked into some sports physio sessions. After two he seemed pretty happy he’d done all he can and sent me on my way with a list of exercises to carry out which would aid my recovery.

In my next personal training session, I told Sam what had happened. I was forever telling her about all the weird things that my body did so she probably thought “here we go again!” I never told her these things for her to go easy on me, or to get an easier ride. I just felt she should know if she was training me.

It was on this day that she noticed a weird unexplained spasm in my left leg. As soon as I put any weight into it, it was shaking like there was hundreds of kilos of pressure. Around the same time I was doing a lot of skipping and boxing training in my sessions with her, and I was struggling to hold in my need to go to the toilet which was a completely new thing to me (I’ve not had kids. That’s not a problem for me yet!)

In addition, my whole groin area had that same tingling sensation that I’d experienced in my leg for the previous four years or so.

But there’s an explanation for that isn’t there?

Obviously what I’d done that day I was squatting, was I’d trapped a nerve in my lower back and all sense of anything had been lost. Hadn’t I?

And that’s when I had my first “accident”.

I honestly cannot believe I’m about to share this next bit, but in the spirit of really telling my story and also telling you what MS has been like, and will continue to be like for me, it’s only right I tell you the full story.

If you don’t like toilet talk, look away now!

I cannot explain to you what it’s like to lose control of your bowels at 29 years old. It is terrifying. It is embarassing. It is confusing. 29! This shouldn’t be happening until I’m at least 79 surely?!

I couldn’t stop shaking and it really did upset me. I was hysterical, because to make matters worse it happened in public. Me and Dave were out shopping in Sainsbury’s. I managed to run off to the toilet and I text him asking him to get wipes and a change of clothes and to ask a female shop assistant to chuck it into the toilets for me.

Admitting that this happened (and this didn’t end up being an isolated incident) is not something that’s easy, even now, even with an explanation for it.

Of course, I made all the excuses at the time, even when Dave told me that it’s not normal and I should go to the doctor I brushed it off.

“I’m doing Joe Wicks. I’m on a high fibre diet”

“Ahh I had last night’s cottage pie warmed up in the microwave, maybe I didn’t do it properly”

“It’s where I’ve trapped a nerve. I can’t work out when I need to go because I can’t feel it”

I was full of excuses.

I quickly got very attuned to myself though and managed to avoid too many more incidents. It put a spanner in the works of our social life for a while though because I was so scared of getting caught short again. I didn’t want to stray too far from home and never within a certain window of eating. The fear was very real.

This phase probably lasted for a good couple of months. My left leg continued with the mind of it’s own. Not painful, but certainly irritating.

And I looked bloody ridiculous much to the amusement of EVERYONE. My word how we laughed at me. Two of the people who laughed most have said they feel awful, now we know why, but that doesn’t bother me. I’ve got to find the funny side in all of this. It’s what keeps me going.

We’re all equal, just some more than others

Feminism has become such a dirty word.

There. I said it.

Don’t get me wrong, I’m all for equality. I don’t want to (and shouldn’t!) earn less than Joe Bloggs for doing the same job, just because I’m Joanna Blogs.

Emiline Pankhurst died for me to vote. And for that I will always be grateful, and will NEVER waste my vote.

It’s absolutely correct that I have that right, just as it’s right that we are starting to see so many more improvements in parental rights for men.

The thing is, modern day Feminism has just become ridiculous really hasn’t it?

If Feminism really is what it’s become, then I most definitely am not one.

Feminism seems to have become about “man hating” and being “Independent Women”. I’m all for independence, but the reality will remain, I’m not independent of Dave. Nor do I really have the desire to be. We both bring different things to the table and a lot of those things do sit in stereotypical male and female roles. And I’m 100% ok with that.

Equality for me and Dave, is standing side by side. Making each other a better version of themselves. None of this “behind every great man there’s an even greater woman” or vice versa rubbish. There’s no hierarchy. We compliment one another. We support each other.

But it works both ways. Behind me, there is not greater “him”. But we do make each other greater.

This blog has probably been on the cards for me for a while, but I was tipped over the edge this week by an article Dave shared on Facebook. Linda Reynolds, a Senator in Australia seems to think it’s a good idea for women to be pitched against men to test their physical abilities. And we’re talking here at a professional level, in the NRL (Australia’s pro Rugby League competition). This is such a physical sport and surely that will only end in tears?

Equality is for women to have their own league, that is held in the same esteem as men, with the same funds put into it. Equality is not mixing genders in a sport where men and women have different physical abilities, however you look at it, whether you like it or not.

Common sense has apparently gone out the window when it comes to Feminism. Apparently it is ok for women to kick up such a stink that we’re coming to a point, where I feel that men have less right than women in some cases. We can’t have Feminism just when it suits us.

It is irrelevant whether you are a man or a woman, gay or straight, or indeed black or white. We should all be treated with the same respect that we all deserve. Whether that is down to our pay, our opinions, sporting ability, performance or otherwise.

I’m not sure it should even be about Feminism anymore, but simply about Equality. But perhaps we need to re-evaluate what that really means, because it seems to me that the pendulum is swinging too far the other way.

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.

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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!

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