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.

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