Tag: ms

My MS Story (Part 4)

Image result for i'm not drunk i have ms

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.

Image result for i'm not drunk i have ms

 

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!

Image result for latte

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.

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.

20180223_202655.png
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!

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.

Limbo.

This week has been pretty rubbish.

Actually, emotionally, I’ve been having a couple of really really naff weeks. A few blogs back, I wrote about the fact that I’m currently going through diagnosis for MS. My position hasn’t changed; I’m still going through diagnosis.

This place that they call “Limbo” isn’t really doing much for me right now. I’m not one to really dwell on stuff though. Don’t get me wrong, I have an emotional reaction to something, but it’s usually over pretty quickly and then I just get on with it. But I can’t do that at the moment. I can’t get on and “deal with it” because I don’t know what it is I’m dealing with.

As a result, I’ve found myself in the last couple of weeks being quite short tempered, emotive. Actually, I don’t even feel like me.

On Tuesday I had a full scale meltdown. Sobbed my eyes out, the lot. Because I can’t “problem solve” the energy I’d usually put into that, has nowhere to go.

So many people have told me how strong I’m being, considering what I am going through. Because people have told me that, I’ve found myself wanting to live up to that standard and not allowing myself to cry (which is crazy really because if there’s one thing I am, it’s a crier!)

I definitely feel better for allowing myself to feel my emotions but I can’t help but have this air of sadness hang over me. It feels alien to me. As a general rule, I have a naturally happy disposition.

At the advice of a colleague, I’ve contacted our employee assistance programme at work. I need someone to talk to. I’ve used it before and it’s brilliant. She correctly pointed out, I need to talk to someone before it gets worse.

Having taken a couple of positive actions (I also called my Neurologist’s secretary for an update) I feel a bit better. I feel less like I’m allowing this to “just” happen to me.

Thankfully, I’ve got an amazing bunch of people around me, from family, friends and work colleagues, to friends I’ve only met online.

You can’t ever underestimate the value of having people that really care about you around.

Crying about it won’t fix me

I’ve not known whether to talk about this openly or not, but here’s the thing. I’m currently going through diagnosis for a neurological condition. They (the doctors) think it’s MS. I’m inclined to believe them.

Reflecting on my health over the past 6 years, I’ve had funny little glitches with my body, along with some serious eye problems thrown in. It was the recent blindness in my left eye, which has sorted itself out now; but triggered the diagnosis I’m going through.

I’m constantly shattered, I’ve permanently got a tingling in my legs and sometimes they feel so weak I don’t want to stand up anymore. I spend my weekends catching up on sleep and even that’s not enough sleep. And this isn’t even half of it.

It’s tough right now. All I want are answers. Unfortunately though it just doesn’t work like that. I just keep getting sent for more tests.

The positives that are already coming out of this for me though is a desire to be happier with who I am, and loving myself more. If things don’t fill me with happiness, why are they in my life?

I’m amazed at my own strength. Sure I spent the first three days of my holiday flinging myself about and crying my eyes out, but I’m through that now.

It’s one of those things that’s just shit. There’s no other way about it. But the fact is, something is up with me and there’s no point wallowing in it. Crying about it isn’t going to fix me. But being strong both physically and mentally will at least put me in the best possible situation to deal with what lies ahead.