After a life-changing year, in 2018, I was determined to make 2019 a good one! Well, less eventful anyway. I know this may sound silly, but I bought a positive diary, so that I could write down the positive things that happened each day. I wanted something to look back on, at the end of the year, to remind myself that even if bad things happen, there is still the good things that have happened too.
Just over 2 months into my blogging journey, I was still finding my feet. I was hesitant to be open about certain things, but I wanted to be more honest. This is my space, to share my experiences, my thoughts. Slowly but surely, I’m almost there. I hoped to get involved more with raising awareness, but it turns out that 2019 had a lot in store for me. Shall we take a look back at 2019?
Within the first month of the year, I quickly realised that Ewan and I were getting married THIS year! This was the best excuse to be able to talk all-things-wedding each and every day, albeit if Ewan was actually listening…
Even though there have been stressful times along the way, I thoroughly enjoyed planning our wedding, mainly because it was superhero-themed! Anyway, I’m straying away from the topic at hand here, I was scrolling through my Facebook news feed one night, when I came across an advert. New Skills Academy, an online platform where you can study courses, advertised their Wedding Planning Diploma!
But do I love wedding planning enough to actually consider it as a career?
The more I contemplated at the thought of being a wedding planner, the more I couldn’t stop smiling… and once I saw how much the course would cost, my mind was set! I learned so much from this course and I’m really pleased to say that I passed! Amy, from Sassy Cat Lady, and myself, have something really exciting planned for 2020 – a date is to be confirmed, for the launch, so watch this space!
On the 20th of January, my lovely Grandad passed away, he was 99 and the strongest man I’ve ever known. He was a very special man with a heart of gold. He will always be in my heart.
Three days later, it was my birthday. I didn’t feel like celebrating, mainly due to my Grandad passing away, and that I had to attend my ICU review at Addenbrooke’s on my birthday. Surprisingly, my review was really positive and I came away with more closure than I had hoped for. You can read about my ICU review here.
Continuing on with the positives, I was featured in Motability Lifestyle magazine, and briefly spoke about how online communities can be beneficial in more ways than one. For example, being a part of Scope’s Online Community has had a massive impact on my mental health and self-esteem. This was my first time being featured in a magazine and I was both nervous, and excited!
Finding a wedding dress was an experience that I will definitely never forget! Trying to find the right wedding dress is a lot easier if the boutique is accessible and has a vast range of designs available, otherwise I would have had a stressful experience with more than one boutique. Even though I fell out of my wheelchair, I still found the best dress for me! You can read about my experience here.
I reached a massive milestone where I stood up, completely unaided, for five minutes – I still can’t believe that I managed to do it! Side note: since then, I’ve been able to stand up and hug those that are close to me; all the pain has been worth it for those few previous seconds.
The beginning of March was very emotional for me, it was one year since I was admitted to hospital and my life changed. I spent a couple of days just crying because I was terrified that it was going to happen all over again, and overwhelmed that I survived. It’s been a journey and a half, that’s for sure!
This may seem a very small feat, but this made me so happy! Over the years, I never had any issues with letting my hair grow, however during my hospital stay, I noticed it wasn’t growing at its usual pace. This really worried me and it kind of became an obsession where I would check the length of my hair daily to see if there was a difference. Sadly, there wasn’t.
That was until Marie came over to do my hair and make-up trial! Part of the routine involved her straightening my hair, and within a couple of weeks, I noticed a difference! So much so, my hair could finally be tied up in a ponytail again! Like I say, small feat but this made me incredibly happy!
Having a condition which affects your fine-motor-skills, like Ataxia, can cause challenges when trying to complete an activity that requires precision, like applying make-up. I never got the hang of it, I always got the wrong shade of foundation, etc. So, I just stuck with black eyeliner and mascara for years.
Having been given the opportunity to write about how Ataxia affects my ability to apply make-up piqued my inner-teenage dreams of actually being able to look nice! There were a few happy tears along the way but I think I did a good job, all things considering!
Anybody who knows me, will know I’m devoted to Scope. I’m one of their Online Community Champions and I was completely taken aback when I received Community Champion of the month! I love the online community so much and it is very special to me.
April was definitely a rollercoaster of a month for me. I applied for an online job and was fortunate to get to the interview stage, I was more nervous about my hearing impairment as this would potentially cause a huge barrier. I’m really grateful that Ewan was allowed to be present during the interview so that he could relay the questions to me.
Unfortunately, I was unsuccessful, not because of my disabilities but instead, due to my lack of experience in certain areas. I was gutted but who isn’t when you get turned down? I hope more employers offer the same reasonable adjustments.
April was a huge month for superhero fanatics as Avengers: Endgame was released in cinemas. Also, it was my first time going to the cinema, as a visually impaired person, and I wasn’t sure what to expect to be honest. I was worried about how the speed and lights would affect me. It was such a fantastic epic, but the effects really overwhelmed me.
It was part of the reason that led me to a mental breakdown. I was still learning what I’m comfortable with and not comfortable doing. But that was a pretty big blow. The other reason, that caused my breakdown, was toxic people. They were dragging me down with snide remarks about having a chronic illness. It had taken a few weeks to gradually build myself back up to a point where I could at least do one thing that I loved. That was a really tough time for me.
Despite a negative start to May, due to recovering from my breakdown, it was actually a really positive month! I was due a PIP (Personal Independence Payment) home assessment, I was previously awarded the enhanced rate for both components and the award lasted for one year, which would then mean I would need to be reassessed to see if I can still claim the benefit.
However, due to being in hospital and rehab for more than 28 days, my PIP was stopped until I could be reassessed after being discharged home. Took a bit longer than expected, but we got there. It is disheartening when I read about the bad experiences people have had when claiming PIP, or any benefit for that matter. That’s why I take so long to decide if it’s a good idea to share my positive experiences.
The woman, who came to my home to assess me, was really lovely, I very rarely come across people who acknowledge my communication issues straight away and take their time with me. I can’t fault her; I was really open and honest with her too. After telling her what I can and can’t do myself, I admitted that I miss being employed and that I would love to work again.
I was immensely relieved when I received my decision letter that stated I would continue receiving the enhanced rates for both components, but this time, I wouldn’t need to be reassessed until 2029. It’s kind of daunting to think what my life will be like in ten years’ time, but it is comforting to know I have a bit of financial security to cover the extra costs.
I was completely blown away with this opportunity… I was asked if I would like to be the face of Scope’s next fundraising appeal! I’ve never been the face of anything, well, apart from myself obviously. This allowed me to share, with Scope’s supporters, just how much the online community means to me and how much it has changed my life.
I was super excited after speaking to Kate, from Magpie Wedding, about contributing articles to her website and online magazine! What a dream come true this was!
I was like a little kid at Christmas when Charlotte, from Time to Talk, suggested she would try making me a logo! I knew she was incredibly talented already, but this hit the ball out of the park! I still love it just as much as I did when I first saw it!
July was a whirlwind of a month, from having a camera follow me and take pictures of me and Ewan, in our home and outside, to having two attempts at giving our notice of marriage.
Scope arranged for me to have a photoshoot ahead of the fundraising appeal and the campaign I would be involved in. It was really weird to have a camera around me for nearly 3 hours. It was extremely humid that day too, so I didn’t look my best (thanks weather!). All in all, it was a good experience and loads of photos were taken.
This was my peak Auntie moment of the year, one of my twin nieces said my name! She said it so perfectly clear that I actually heard it! This brings tears to my eyes every time I think about it. Such a beautiful moment!
The reason we had two attempts, at giving our notice of marriage, was because I thought I had bought my FULL birth certificate with me, but it turned out I didn’t. I’m glad we had to reschedule because the woman, at the first appointment, was rude and ignorant, she didn’t even try to communicate with me. Thankfully, the lovely bloke, at the second appointment, included me in everything and he took his time with me to help me understand everything.
He treated me equally and with respect. Like how every disabled person should be treated.
I was involved in Scope’s Travel Fair campaign, where we would challenge public transport on how they need to improve the services they provide to give the disabled person a better, and safer, experience. We shared our previous experiences, either on trains or buses, and the general public were sharing their experiences too.
This was my first-time campaigning, and it really opened my eyes as to how we can make a difference together. I hope this was the start of more campaigns to come!
Ahh… the Superhero Tri! That was such an awesome day! I still get excited when I think about it. I got to team up with Hannah, an incredible woman through and through. Walking across the finish line with Hannah was… I still can’t put it into words how special it was. It definitely shares the top spot of my favourite moments from this year!
Ewan and I finally got married! I had been working so hard, for over a year and a half, to build my strength back up and walk down the aisle. It was my ultimate goal and I was fixated on getting it right. I did it! I walked down the aisle, with the support of my Mum and my best friends’ boyfriend, and even remembered my vows! Win-win!
Now, I’m going to be honest, I know I’ve said for the last couple of months that I would share with you all about the wedding day. I want to, really, I do. It was a lovely day but there were a few things which upset me, and I’m still trying to move on from it, but its proving to be more difficult than I had anticipated.
So, I’m not going to say when they will be published because I can only write so much before I get frustrated and need to take a breather.
The main thing is, we got married. Nothing can ruin that!
After nearly 10 months of being at home, I was relieved when the adaptations began! Having to have a hot wash at the sink and still not feeling clean, not being able to sleep in the same bed as Ewan… it really got to me. Side note: I’ve been sleeping beside Ewan since October and sometimes, I wake up and watch him sleep. I wasn’t able to be beside him for over 18 months… I feel safe beside him, I don’t feel lonely anymore.
Im still getting used to having a shower at home, I cherish it so much!
A week after our wedding, we went on our honeymoon. It was the break we desperately needed. Plus, I found out that I’m much better at pool as a disabled person! I hope we get to go on more little holidays like that, not just so I can beat Ewan at pool again… but here’s hoping!
I didn’t think anymore of my dreams could come true… I mentioned earlier about contributing to Magpie Wedding, and whilst on our honeymoon, I received an email from Kate to say that my article had been published in their online magazine! I was so ecstatic! I would have jumped up and down, but I can’t so I had to settle for a first pump.
I’m pretty damn proud of the article, if I do say so myself. I just hope I did the disabled community justice!
UndercoverSuperhero finally turned 1! I couldn’t have got this far without each and every single one of you, thank you from the bottom of my heart. To every person that has featured in ‘The Reality of…’ series, thank you so much for sharing your story and raising awareness. I hoped to create a space where our voices can be heard, to show that not all disabilities are visible. The series will be ongoing, there never should be a limit to a person’s voice being heard or a disability being spoken about.
After the wedding was over with, it appeared that my mental health had taken a huge step back. I had been consumed with all the planning, working hard in physio, to then realise I no longer had anything to work towards. I felt lost. It was horrible. Side note: this mindset is still lingering but I think I’m slowly getting there.
November has been the hardest month of 2019, Loki passed away suddenly and I still miss him terribly. He will always be my handsome little boy.
I was completely and utterly flabbergasted when I found out I had won the ‘Gamechanger’ award from Scope. I didn’t know they have volunteer awards, or that I’d ever receive an award. I think I need to start believing in myself more!
I received a new diagnosis, Mitochondrial Disease. I’m still getting my head around the fact that its confirmed, it’s most likely the root cause of my hearing and vision impairment, and Sensory Ataxia. This has made me anxious about my future, and I’m a little unsure of where to go from here, but I have the right support behind me and my condition will be monitored. One day at a time.
On the 29th of November, it was one year since I had been discharged from rehab. This was an overwhelming and emotional day for me, reflecting on what I’ve achieved this year and how much my rehab family mean to me. Ewan and I presented a cheque to the trust, where £600 would be shared between the physiotherapy and occupational therapy department.
I surprised them by announcing that I would be donating the same amount each year, on the same day. I want them to receive all the recognition they deserve, not just because of what they do, but also who they are. They will always be more than medical professionals to me, they’re my friends, my family even. I love them so much and I’m getting teary just writing this, so I better stop there!
A few weeks ago, we had to make the tough decision of putting Thor to sleep, he woke up one morning with a horrible ear infection. I’m still trying to focus on that the boys are back together again, but it is still so raw and hurts. Thor was my gorgeous little boy. Forever my babies.
To end the year on a high, I achieved something HUGE in my last physio session of the year! Somehow, I had the strength to get on my hands and knees, and balance on my knees! I couldn’t believe it! I really hope this strength continues and, hopefully, I will have achieved more by the end of next year! If I don’t, then that’s OK, I’m proud of how far I’ve come and I’m grateful for the mobility I do have.
Wow, what a year! I like to think I’ve been spontaneous this year and done things which were out of my comfort zone, like campaigning and speaking in front of people. Aside from a few negatives, 2019 has been an incredible year and thank you all for letting me continue to share my journey with you!
My recovery, is as ever, ongoing. I notice small improvements which I’m grateful for, but I still have a long journey ahead of me. Since I was discharged home, I’m aware that I’m a lot more tired at home, than I was at rehab, I think because there have been different things going on, it’s had a knock-on effect.
Regarding my mental health, it’s been very up and down. I’m still experiencing flashbacks and nightmares, I thought they would get easier but they are still intense. I’m still learning to accept that I will have good days and bad days, I won’t be able to predict when they will be which is why I’m trying to take it one day at a time.
Recovery doesn’t have a time limit, everybody is different and we adapt differently. I’ve got to focus on what is right for me, just as much as you have to focus on what is right for you.
Can you sum up your 2019 in 3 words? What are you hoping 2020 brings for you?