Tag: vision

My MS Story (Part 7)

All I could do was wait for an appointment, and in early August I got the letter that I’d been waiting for. Not a Hogwarts Letter (because we all spend August hoping it’s our year, right?) but a follow-up appointment for the 11th September, back at St Paul’s Eye Unit.

As the date rolled around, two days before Dave and I were due to fly out to Athens for two weeks, I almost considered not going, as my eye was more or less (I’d say about 95% ish) back to normal by then. It didn’t cross my mind that there would be anything underlying.

In terms of the progression of it, it had probably only continued to get worse over a two to three week period, remained as it was for a week or so, then got better within another two. I don’t think things were “wrong” for more than six weeks.

My Mum spotted the connection. Six weeks was the same duration as my “dizzy periods” four years earlier. She suggested that they might be linked, but I told her I couldn’t see (I know – I’m so funny!) how they could be.

Mum’s are always right though aren’t they?

Out of morbid curiosity about what on earth had happened, I decided to go to my appointment.

It was for 1.45 in the afternoon and I was called in for a couple of initial tests really quickly. I passed the ones I had failed so miserable just two and a half months earlier, with flying colours. My vision was back!

My high spirits didn’t last too long as I waited for an hour to be taken back in for a field vision test. I had to stick my head in this white box thing and click this device that they put in my hand everytime I saw a little light flicker – it could pop up anywhere. Then I was sent back into the waiting room.

After a lot of sitting around, I was finally called in to see the opthamologist at 4.15 pm. My high spirits at passing all the tests had long gone – I was really mad that I had an appointment time but still had to wait 2.5 hours to see someone.

He was very apologetic for the long wait that I’d had and started off by asking how my sight was now. I told him that I felt that was about 95% there.

He then told me that they’d diagnosed what had happened as Optic Neuritis. He explained that it was nerve damage to my eye. The myelin sheath was damaged which in simple terms meant that if you liken your nerve to an electric cable, the insulation had worn away. My eye was short circuiting!

Optic Neuritis explained

The good news was that my body, being the amazing thing that it is, had repaired it, but I was told that 95% is probably the best that I’d ever get. Sounded good to me! I could live with that.

The thing is, he wasn’t done. Finding what it was, wasn’t enough.

They wanted to know “why?”

He asked me if I suffered from mood swings. I said, no more than the average person (all the while thinking it was a stupid question after he’d made me wait 2.5 hours), and that leg tingling question came up again.

And then he changed my world.

“We need to send you for more tests. We think there is an underlying condition and that condition that we’re looking for is MS.”

I must have gone into shock. I was still so happy that my sight was back, I may as well have just asked if I could have fries with that!

He asked me what I knew about the condition, which was probably about the same as anyone that has had little to no contact with it.

I knew of two people with the condition. Both in a wheelchair. Both people suffering badly. The kind of people where a hint of sympathy, or perhaps pity, enters people’s voices when they’re mentioned.

Surely that wasn’t going to be me?

I told the doctor the extent of my knowledge and he told me not to compare myself to people I knew. The prognosis for me was probably quite good as I’m young and active. Plus, medicine is advancing all the time.

I said thanks to him and left. The second I walked out of his office, everything that had just happened hit me. It was so hard to hold it together until I could make it out of the hospital.

Then the floodgates opened. Despite how incoherent I was through the tears, I immediately called my Mum, followed by Dave and then Steph, my manager. Distraught does not even begin to cover how I felt and I don’t think I’ve ever cried like that in all of my life.

Somehow, in spite of all my tears, I made it to the train station and back home. When I got there, Dave had already done loads of research, and his words were “don’t worry. We’ll get through this together.”

It’s difficult to describe, but the use of the word “we” suddenly made everything easier. He was in it it with me and I wasn’t alone.

He has been the difference in all of this. He’s my strength. He’s the one who catches me when I fall (literally). He’s the one that comes to my appointments, and he’s the one who listens to, and comforts the tears.

I could have done it without him. I’d be selling myself short to say I couldn’t. But without him by my side, I don’t know if I could remain as strong as I do. It would have been far more of an uphill battle.

My MS Story (Part 6)

I promise I’ll get on to telling you what MS actually is at some point soon – but for now I want to tell you the story as it has unfolded for me.

In June 2017 I was at Poppy’s play date. As is typical in the UK, the fact that it was June, didn’t stop it from raining. I was stood on a hill watching Poppy play with her buddies, Dexter and Til when I got (what I thought was) some rain in my contact lens. I wiggled it around a bit, sometimes that fixes it, but no luck. I’d slapped my make up on in a hurry as well that morning so perhaps I’d managed to get some foundation or mascara on my lens. That certainly wouldn’t be a first.

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Poppy (in red) and her pal, Til

Once I got home, I gave the lenses and my eyes a good clean with saline solution, and popped it back in. No change. Enter the excuses. “Well it could just be the new prescription. It always takes a while for my eye to adjust.”

I carried on with this irritating, slight lack of focus into the next week. Making excuses such as “oh, I’ve just put them in back to front”. It wouldn’t be the first time I’d put the left lens in the right eye and vice versa. I have different prescriptions for each eye so this obviously causes me problems.

On the Thursday, I was trying to read the serial numbers off some computers and was really struggling. I REALLY knew there was a problem when in our team meeting on Friday I found myself having to walk right up to the projector screen on the wall to see what was on it.

Saturday, we were back at Poppy’s play date and I could tell that whatever was up with my vision had got worse. Those of you that are contact lens wearers will appreciate it feeling like I’d not bothered to put my contact lens in the left eye. If I covered my right eye up, everything went grey in my left. I had limited peripheral vision still but I couldn’t see straight ahead. If I looked directly at you, I could see you from about chest downwards.

The gravity of what I was losing hit me like a ton of bricks and I broke down in tears once we got home from Poppy’s play date. I was really lucky and managed to get an appointment to see my Optician within a couple of hours.

When trying to read the letters off the wall out of my left eye, I couldn’t see a thing. My optician said based on all the photos he took of my eye, he couldn’t see anything wrong with it, but also said there was clearly something very wrong because I couldn’t see. I felt so relieved at this – at least I wasn’t dealing with a detached retina.

He referred me to Boston House, a branch of the hospital and the eye specialist in Wigan, for further tests. He also suggested, if it got any worse in the meantime to self refer to St Paul’s eye unit, at Liverpool Hospital.

By Tuesday evening, I’d still not heard anything from Boston House about an appointment, and I was pretty hysterical. Following a conversation with mine and Dave’s line managers, it was agreed we could take the day off from our respective jobs to go to St Paul’s in Liverpool.

That first day in outpatients, went on and on. After going through Triage, I was eventually seen after almost 1.5 hours. They prodded my eye about, putting every drop in my eye you could imagine, and making me (attempt to) read coloured blobs with numbers hidden in them, and the letters off the wall. Where my left eye was concerned, I failed every single test miserably. My least favourite experience is where they dilate your pupil. They put a drop in which opens your pupils right up, so that they can get a good look at your eye. Kind of like this guy, except waaaay less cute!

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Your pupil being dilated, means that there is a hell of a lot more light going in than usual, and you’re in a brightly lit hospital waiting room. It REALLY hurts!

Anyway, I digress. After all that prodding I was informed I needed to come back the next day as the department that could take a photo of the back of my eye wouldn’t be in until then. But not before I’d been asked if I had any tingling in my legs.

Now, if you’ve been following my blogs so far, you’ll know that yes, I did have tingling in my legs. So obviously I lied and said no. To ask such a seemingly unrelated question frightened me. One, why are you asking me that and two, how do you know that?!

I duly arrived at the hospital the following day for an appointment to have photos of the back of my eye taken. I was then introduced to an opthamologist. She informed me that I actually had lovely looking eyes that were pleasant to look at, whilst asking me if I’d been Googling my symptoms. I told her that I’d stopped as Google may as well have just told me that my eye was going to fall out, and I didn’t have any interest in that rubbish. She laughed and asked me if I was experiencing tingling in my legs. There it was again.

I lied.

It didn’t really enter my head that this might be a really important question to answer and it definitely didn’t enter comprehension that lying about it wouldn’t change it.

She told me she couldn’t see my optic nerve, the bit behind my eye, and she wanted to send me for more tests to uncover any problems there. She assured me that just because she suspected my problems were nerve related, it didn’t mean anything sinister.

Just a day later, on Thursday, I got a call from the hospital asking me if I could go in for an evoked potential test the following Monday. I couldn’t do Monday. I needed to be in Nottingham for a really important meeting, so I asked for the next available appointment, which was in two weeks time.

I got off the phone and Deb, who I work with, told me I was an idiot for not putting myself first and to get back on the phone and see if I could take the Monday appointment. As it turned out I could, so on Monday I found myself back on my way to Liverpool to have a bunch of electrodes put on my head, around my eyes and in my eyes.

The electrode, it just felt like an eyelash stuck in my eye. But honestly, if you stick something resembling a stray eyelash in someone’s eye and then tell them not to blink, you’re asking for trouble! I couldn’t stop blinking, and I’m pretty sure I made the nice Irish doctors job very difficult. He stuck electrodes anywhere he could on my head, and then made me watch these really weird moving images. They looked a bit like those magic eye things we all used to do as a kid. You know, with the hidden 3D drawing? The idea is that the images put your eye under intense stress, and the doctor gets to see how it responds. I was pretty sure that the images would hypnotise me or something!

Maybe he did hypnotise me or something, because when I was asked (yet again) if I had tingling in my legs, I answered truthfully.

Apart from an invite to an MRI scan on my head, this was the last I heard for a little while. Whilst I understood that the MRI was on my head, I just thought of my eyes. I never actually made the connection that it was on my brain. Perhaps if I had, I would have realised what I was dealing with, but I simply didn’t.

Me, Myself and I

This evening I have a rare Saturday night on my own. It’s funny how this feels like a real treat. Rewind 10 years and I’d be off out to get “on it”. Rewind 7 years and I would be crying into my ice cream in the style of Bridget Jones. Go back 5 years, in the very early days of my current relationship I would be feeling as though I had lost a right arm. Ghosts of boyfriends past haunting me, wondering what the hell is he going to be doing, or more accurately WHO the hell is he going to be doing?

Now, in a completely settled and trusting place with my partner, Dave, whilst I love him very very much, the prospect of a night in alone is “The Dream”.

I have friends that find my excitement at him going out strange. If we go back to me from 7 years ago, if asked, I’d agree. However as I’ve grown up, I’ve learned to value, and I mean REALLY value, that time where I hang out with no-one else, just me.

To be able to spend some time on my own is an absolute luxury for me; I work away a lot, and invariably I’m with colleagues. If I’m not with colleagues, sure I’m alone, but I’m not in “my space”. I’m stuck in a hotel room. Don’t get me wrong, they’re more often than not, very comfortable rooms, but it sure ain’t home! The rest of the time, Dave and I are pretty inseparable. Which is lovely, but there comes a point where I just need to be alone!

I can’t say I’ll be doing anything ground breaking. Probably just catching up on some washing, lighting a couple of candles and binge watching Grey’s Anatomy. There may be Yoga and there will definitely be meditation. Not rock ‘n’ roll, but it feels like some quality “Goddess Time” to me!

Hope you have a Saturday night which will be as fulfilling for you, as mine will be for me, whatever you do 🙂

Jxx

Goodbye 2017, Hello 2018!

In my last blog post, I talked about my hatred for New Years Eve and the focus on self improvement seeming to come from more of a “beat myself up” place than a move towards personal growth.

The back end of 2017 was very much about self-love and connecting with myself for me, and this shifted my mindset as to how I perceive New Year. It is a great opportunity to think about the upcoming year, and give yourself some goals and something to work on for the next year.

In order to help me create my “Vision Board” for 2018, really understand what I want out of life, and to set me a clear plan of how to make my dreams become a reality, I sponsored a KickStarter project, from the girls behind “Project Love“.

The “Goodbye 2017, Hello 2018″ workbook is a tool to help you take stock of the year you’ve just been through and set some intention and focus for 2018. The audio guide that comes with it coaches you through the workbook and really helps you to answer some all important questions for how you want the year to look.

After reflecting on 2017 you are asked to think about what you want to do with you life in 2018. What I really found was that the fact that I’m still awaiting a diagnosis for my ongoing health worries, was that I was really letting that define (or rather stopping me from defining) my 2018. It was quite eye opening, and it really took some work for me to break that barrier down and see past what is currently unknown.

Finally, you are challenged to answer questions that will shape your 2018. Read on to see my answers…

2018 is my year of: self-love and me!

In my commitment to making 2018 my year of self-love and me I will:

  1. Complete Mel Wells’ Academy
  2. Buy a house so that I have my own space and spend less time living out of a suitcase
  3. Make time to blog, meditate, read and do all the other things that I love to do
  4. Give ME time – I’m constantly rushing around like a mad woman, trying to please others. I will schedule time in for me to hang out with me
  5. Say No!
  6. Learn not to worry about what I have no control over

Declare this commitment to someone who cares about you and wants you to live a life that you love: This person will be Lucy. She doesn’t know it yet, but no-one has my back like her, and she’ll definitely hold me to account if I don’t do what I’m supposed to do!

I’m excited to see what 2018 brings, and I’m excited to look back on this workbook throughout 2018 to see how I’m getting on. I really enjoyed doing this project and can’t wait to see how it works for me!

I’d love to know how you would answer the above questions in the comments below 🙂