Hello to all of Pete’s readers! I hope you are doing well and the sun is shining where you are.
Firstly, I would like to say a huge thank you to Pete, for sharing my story on your blog. You are a very kind man to have done this and I will be forever thankful. Secondly, to you, the readers, thank you so much for reading my story, liking and commenting, I really do appreciate it.
I bet you are wondering who I am by now! My name is Ami, I’m 26 and live down the road from Pete (well, about 20 minutes away) but we’ve never met yet.
I am the blogger over at Undercover Superhero https://undercoversuperhero.com/ and have been blogging since October 2018. On my blog, my story is called ‘My Recovery’ and currently has 13 chapters.
There are only 13 chapters so far as I’ve not had time to really focus on writing more about my recovery. Not bad going though, considering I struggled to type with one finger at one point. It is true that, in total, I spent 9 months in hospital and a specialist neurological rehabilitation centre. During that time, I went from bedbound, total loss of co-ordination, dependent on everyone and anything to do the most simple tasks.
To then learn to write, type, eat and drink independently, sit up, stand up and walk again, albeit only a couple of metres with my walking frame and the assistance of 2 people. What have I been up to since being discharged from rehab in November 2018?
Ewan and I got married, and I walked down the aisle with the support of 2 people, this was my motivation to give it my all when I was receiving intensive physiotherapy, and it definitely paid off! In November 2020, we welcomed our baby girl, Daisy. She is nearly 7 months old now and is amazing. I love her more than anything. Aside from being a mum, and blogging, I enjoy writing for different publications and raising awareness.
Ever since Pete published the first part, I have been keeping up with the comments, and I would like to reply to some of them here. Nothing bad, but some of them really touched me.
“It seems to be a mystery to everyone, but meanwhile, the writer’s health seems to be declining more rapidly. It must have felt like there was no reason to hope.” – You are absolutely right, I had no reason whatsoever to hope. I was losing everything and to say it was devastating would be an understatement.
“I don’t understand the disbelief from the others unless there have been past episodes that suggested the writer might be exaggerating. I would think most people would err on the side of caution and do everything to make sure a loved one was really okay”
I asked both Mum and Ewan why they didn’t believe me when my symptoms were at their worst. It definitely wasn’t a case of not wanting to believe it all, but they just genuinely could not believe everything that had been happening. I was angry with them for quite some time after it initially happened but it really wasn’t their fault. They didn’t know what to do and I don’t blame them at all now.
“This is a real living hell, I’m hoping there is a happy ending as no one should have to go through all of this.” – That last bit really got to me, I think because it was all a constant, and there was no break in-between whatsoever, I guess I just got used to it and convinced myself that there was a reason for why I was going through all of this.
“Blimey, what else can go wrong?” – This made me chuckle a little, sorry I use humour to deal with certain aspects and saw the irony to this comment.
“I never heard such a tale of woe!” – Me too until I was experiencing it and then also reading back of what I’ve written about it so far.
“Mom never said ‘I love you’ back?”
Not that I remember whilst growing up. However, her actions speaks volumes. If she didn’t love me, she wouldn’t have worked 5 days a week, went home to walk the dogs, then travel to King’s Lynn at the beginning, then to Cambridge when I was at Addenbrooke’s, stay with me until visiting time ended, travel back home, and then do it all again the next day. Mum made herself ill by doing this, hence why she couldn’t come and see me.
She was so run down with the stress and worry of everything, barely eating, or sleeping, and ended up with a chest infection. So, even when she doesn’t say “I love you” back, I know she will always love me.
“A tracheostomy sounds like a horrible experience” – Initially, it was very daunting. But, had I not had the tracheostomy, it would have taken me a lot longer to recover. Yes, the process of having one is not pleasant, but that aided my recovery significantly. In comparison to the breathing time, it was in a league of it’s own, and in a good way! I no longer have the tracheostomy, it was removed after a few weeks of having it, I’m left with a slight scar.
“How did she eventually remember so much detail?” – I wondered this too, and asked this when I attended my ICU reviews. Apparently, some patients do remember a lot of what happened, some don’t. I think it’s clear that I’m one of the one’s that do! Would you be surprised if I told you that I have PTSD?
“Perhaps an alternative title might have been ‘If you think things can’t get worse…” – This also made me chuckle. I wanted to give some hope, given the circumstances!
“Addenbrooke’s – “Nothing but praise” – Absolutely spot on! This hospital saved my life and I can’t fault them.
I was quite taken aback reading everybody’s reaction to my Ataxia diagnosis. It could well be my adaptable mindset talking but with the right support, equipment, etc. You can still have a good life. Given all of my diagnosis, we were convinced that I wouldn’t be able to have a baby, so Daisy will always be our miracle.
Lastly, I just want to say thank you again to every single one of you, and Pete too. If anyone has any questions, or would like to get in touch with me to have a chat, a natter, a bit of banter, then I’m only an email away. My email is firstname.lastname@example.org
My sincere thanks and love to you all!