Category: ms

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!

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.

Answers.

Some of you will know that I have been having a really uncertain time with my health recently.

Back in June, I went blind in my left eye. After electrodes in my eye, countless questions about tingling in my legs and a brain scan I was told in September that I might have MS.

After every blood test imaginable, two further MRI scans, a meeting with a neurologist and A LOT of waiting, on Thursday I was diagnosed with relapsing remitting MS. And do you know what? I’m OK. I’m no different to Wednesday. Or May last year before I went blind.

That doesn’t mean to say that I’ve not got a tough period of time ahead of me whilst I come to terms with it. But I’ll get through it.

I might have MS, but it sure as hell won’t be having me.

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.