Emily Felix

My days are, most of my energy is spent

trying to work and then once I'm done the working day yeah I just want to go to sleep then it's draining What about pain Emily do you have a lot of pain?

Yeah, I do.

That's another thing that has progressed, though.

I suppose in the first few years I didn't have pain, but now I have nerve pain every single night without fail.

I wake up at least once a night with this burning sensation in my feet, and it is nerve pain.

I was offered medication at one stage,

to ease that pain but like a lot of medications they have side effects and with this particular medication fatigue is a huge side effect and for me

fatigue.

I'm already suffering so much with it.

So I had to weigh up the pros and cons.

I suppose medical professionals are

haven't been telling me necessarily what to expect.

I suppose they don't want to exactly tell you what to watch and when it'll come because everyone's so different.

The disease affects everyone so differently.

But

The reality shows when you look at other people's progression with Friedreich's ataxia.

I'm aware that my speech will disappear in the next few years.

I'll be reliant on a synthetic voice.

My swallow will progressively get worse to the point I need thickeners.