Another Update

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If you had read An Update, the other day, then you will know I had a neurologist appointment yesterday.

And, if you follow me on Twitter, then you will have seen my tweet.

If you haven’t, then here is an update.

I’ve been diagnosed with Mitochondrial Disease.

I’m emotional and overwhelmed. This is what most likely has caused my hearing loss, vision loss and Ataxia.

After nearly 3 years of trying to find the root cause, they’ve now most likely found it. For that, I am relieved and emotional.

But it’s the prognosis which frightens me. I’m on all the right medication to keep the disease stable. Hopefully I will find out more information on Friday when I see a consultant who specialises in Mitochondrial Disease.

This is hard for me to open up about, although Ewan and a few family members know. I’m worried that having another diagnosis has prevented me from having a baby.

Ewan and I have wanted to start a family but now with my health the way it is, I’m scared. I don’t want our child to suffer because of the possibility of inheriting all my conditions.

The reality of not being a mum breaks my heart.

I know you’re probably thinking I shouldn’t be worrying until I get some definite answers but I just wanted to be more open about it all because it’s just bubbling inside my head and I need to vent.

Thank you to everyone who has sent me messages of support and love over the last few days, I appreciate them so much 💚

With regards to my blog, The Reality of… series will resume in the new year as I want to try and space out content on a regular basis that will suit my blog.

I’ve started collecting badges and I want to start a new segment ‘Badge of the Week’ to show you these awesome badges and just to bring some humour with some of them.

My recovery story is still in the process, I just needed to take a short break from writing it as I underestimated how much I remembered and it completely overwhelmed me.

Everything with blog scheduling and me in general is just very all over the place at the moment so I apologise for that. I will get myself sorted out soon!

💚

Posted by

Hey fellow superheroes! I'm Ami, I'm 24 and I live in Norfolk, UK. On my blog, UndercoverSuperhero, I openly talk about my recovery journey which stemmed from being in hospital and a specialist neurological rehabilitation centre for 9 months. I talk about how I maintain a positive mindset whilst coming to terms with my disability. I love superheroes, so much so that my partner and I are having a superhero themed wedding! I generally like to talk about anything and everything on my blog, I also have an ongoing series called "The Reality of..." which allows readers and bloggers to raise awareness of the disabilities, mental illnesses, chronic illnesses, impairments, that they live with as it is so important to raise awareness! Everybody has a voice! 💚

17 thoughts on “Another Update”

  4. Oh Ami, I am so sorry. I imagine it being hard to process for many reasons, especially as it’s that difficult position of wanting answers and being glad to know what’s going on, but not wanting a diagnosis like this. My head would be all over the place, too. The ‘not being a mum’ part breaks my heart. I feel like a hypocrite because I just ignore this part as it’s far too painful for me to think about in my own situation, but try to take things one step at a time. Is it this upcoming Friday you see the specialist? Hopefully you’ll have a little time before then to write down any questions and he will go through everything with you. Don’t worry about your blog – we’ll all still be here, just take time to look after YOU. I’m always around if ever you want to talk. Hang in there. You will be okay, you’re a tough cookie. Sending lots of love your way  ♥
    Caz xx

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    1. Thank you Caz 💚 it was this friday but I’ve been full of cold all week so have had to reschedule it to next month. I’m always here if you need to talk too 💚

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  8. It’s good to vent Ami and great that you come this far. It is completely understandable how you feel about having a baby and I wish you well. Love your tweets too.
    xx

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