4 Years
How is it almost half a decade since it all happened? It’s strange how the trauma, flashbacks, and memories of those 9 months still consume me on a daily basis, yet with each year since, I struggle more and more to find the words to describe how I feel about it.
Maybe it’s a silent phase, sometimes I can talk about it, but then sometimes I can’t. Maybe it’s a sign of moving on, I don’t know. Something I’ve come to realise is that with physical recovery, most of the time you can get an estimate of how long it will take to improve.
But mentally, it feels like it can take forever – there’s no estimate, no guarantees, nothing. You really do have to take it one day at a time.
Slowly Losing Weight
Hallelujah! It is so bloody hard trying to lose weight when you have limited mobility. One of my biggest weaknesses is bread, but over the last month I’ve cut out 2 slices a day, so 14 slices a week. Which I do feel a lot better for, I’ve since added cereal (Cornflakes) in my day and I’ve noticed 2 big improvements over the last few weeks!
I don’t feel like snacking as much between lunch and dinner, plus it’s helped so much with staying awake and not napping, which I wasn’t expecting, so that’s a bonus!
Hopefully, the numbers continue to go down!
Discharged From London
I feel like I should add a warning to this section as I may come across as angry, livid, frustrated, not my usual self.
If you’ve read my recovery story so far, then you might remember the week from hell I had at the Neurology Hospital in London. Brilliant news, I’ve been discharged! Confused as to why I’m angry? I read my discharge letter.
Oh, where do I even begin?
The date in itself is the main part that makes me angry – 03/03/2018 (so, the day I was discharged as an in-patient from London, and the day before I felt ill, fell asleep and was unconscious which led to my ICU admission). If you can, keep that date In mind and also bear in mind that I’ve only just found out all this 4 YEARS LATER.
Discharge comments: “Impression of left severe anisocoria and optic atrophy. Likely secondary to demyelination and mitochondrial disease.”
In plain terms, my left pupil was a different size to my right, and optic atrophy/neuropathy is the proper name for my central vision loss. Demyelination is where the coating around nerves is damaged which can cause neurological problems (like my Transverse Myelitis and Sensory Ataxia). And the elephant in the room Mitochondrial Disease which is the diagnosis that has been to-ing and fro-ing these last 4 years.
Why I’m angry – I was never told about the severe anisocoria, demyelination, or Mitochondrial Disease. All we got told when we left London that day was I have Ataxia and severe nerve damage (wouldn’t say where). But this proves it was already speculated that I had Mitochondrial Disease before my ICU admission.
I’m fully aware there are so many different mutations and variants of Mito but for the diagnosis to be swirling around, WEEKS into my stay in ICU, instead of being told the day I was discharged from London. It’s just the not being told part that makes me angry. No, it probably wouldn’t have changed what was about to happen, but I still should have been told.
“Mild prominent sulci in vermis” – which means, if I’ve understood correctly, its to do with one’s upright posture. This might be the name for my balance issues, I don’t know, but still wasn’t told this until reading the letter this month.
“Mild patchy meningeal enhancement post-contrast” – From what I’ve read, I think it’s to do with the membranes surrounding my brain and spinal cord. I don’t know what it means as a whole but I’m assuming it’s related to my Ataxia.
“Intrinsic changes in spinal cord” – I’m guessing there was a change in my spinal cord (no shit!) but I don’t know what it means as a whole.
That was the first letter, sorry if I bored you but can you understand why I’m annoyed? It gets better…
This letter was sent to my GP (at the time) one day into my induced coma (09/03/2018) – you know, nobody knowing if I’d wake up…
“We think it most likely that she has a mitochondrial cytopathy” – this is the name given to the group of multisystem disorders that affect the muscles and nervous system.
“We also need to clarify the severity and timing of the B12 Deficiency that has been treated” – this is news to me, nobody has ever said to me that this needs investigating.
“She has brisk pupil light reflex despite the severe optic atrophy which is in favour of a mitochondrial disorder” – I’m still trying to work out if this is good or bad news.
“The neuroimaging shows marked dorsal column high signal compatible with a large fibre neuropathy and the nerve conduction studies confirmed absent sensory action potentials throughout” – This part is a lot to process for me, I don’t know what any of it means.
“There is unexplained pachymeningitis on brain imaging but this is diffuse and uniform” – Correct me if I’m wrong but surely when something-meningitis is mentioned, it’s not good? If that sentence means there was an unexplained infection or inflammation somewhere inside my brain… I don’t know, I don’t know how to react to that…
I have so many questions, I’m really trying to control my anger right now Why was I never told this, why 4 YEARS LATER!
I don’t know what I’m going to do, I feel like I can’t just brush all this off without knowing answers.
It feels like throughout my entire life, all I’ve done is try to seek answers and I did stop searching around the time I was pregnant, you know I felt free from the stress of trying to find answers, I’d accepted that I might never find them. But this has opened up too many old wounds and I feel like I’m back at square one.
I really don’t know what to do, I’m so confused, I don’t know which way to turn. Again, I’m sorry this section is long, it wasn’t easy trying to shorten bits or leave things out. I should move on to writing the next section, but it’s not a positive one either…
Where’s Mummy?
For several months now, when someone says “Where’s Daddy?” or “Where’s Nanny?” Daisy knows who to look at. She also knows Max and Molly, and knows which one is which. But if someone says “Where’s Mummy?” she doesn’t look at me. And it hurts.
I know she’s only 16 months old, and these things take time, but it’s starting to make me think all sorts. Like, am I doing something wrong? Am I not doing enough? Is it because I can’t physically do much for or with her?
I need to be more patient, I know that. It’s just… hard.
I Got Tickets!
With things going pear-shaped, I wanted to cheer myself up a bit so I bought tickets to MCM Comic Con in May! I don’t know who’s going to be there yet, hopefully, the announcements will start coming through in April. Ewan won’t be coming as he’s going to his best mate’s wedding.
I can’t even begin to guess who might be there, as there has been so much happening since October’s event. Hopefully, with April’s round up, I’ll be announcing who I might get to meet!
Comic Con isn’t the only event we’re attending this year. In September, we’ll be going to see In The Night Garden Live, Daisy is besotted with the program and especially Iggle Piggle and Upsey Daisy. So that’ll be a new experience!
Daisy
What’s Happening In April?
There’ll be more content coming your way as I’ve finally got my arse into gear. I’m going to be taking 2 courses, one in freelance writing, and the other in affiliate marketing. I’ve looked at their curriculums and they are both jam-packed with so much value, so I’m excited to implement what I learn after!
There’ll be a few new pages that can be found on the blog (starting from April and working on them up until the end of June). Me and Ewan will be taking part in the Superhero Tri this year! YAY! I need to set up the fundraising page for that so I can start sharing it hopefully around mid-May, the event isn’t until August so there’s time to get some momentum behind it hopefully.
I think that’s everything up to date for now. Oh, actually one more thing…
I’ve kept this a secret since December last year as I wasn’t sure how it would turn out with my accessibility needs but so far, it’s gone quite well and I’ve learned so much along the way. I wanted to get involved with this specific project as accessibility is a key element I would love to assess for a specific job.
So, superheroes and villains, I’m very excited to be promoting the Scope Disability Equality Awards!
We are excited to announce that we are launching our first Scope Disability Equality Awards. The awards will highlight disability equality, inclusion and social change. And celebrate the people and organisations who make this happen.
In 2022 Scope marks its landmark 70th anniversary. We believe there is still so much more we can all do to achieve true equality for disabled people. That’s why we are launching the Scope Disability Equality Awards. To shine a spotlight on equality champions and campaigners.
Do you know someone who is doing fantastic work to create a fairer society for disabled people and their families? Then nominate them now at www.scopeawards.co.uk. Nominations are open from Tuesday 15 March until Friday 29 April. For more information, please contact awards@scope.org.uk
– Scope Disability Equality Awards
I’ve been involved with the production of this and mainly focused on the accessibility aspect which is something I’ve really enjoyed! The ceremony won’t be taking place until later this year, and we still have tasks to complete – one of them is assessing the accessibility of selected venues, I’ve put my name forward for this and really hope I’m one of the few who gets chosen!
It’s surreal to see it all slowly come together and it really is an exciting opportunity for me.
So if you know someone who should be recognised for what they do for disability equality, go and nominate them!
Blog Posts This Month
