I was discharged from rehab on 29th November, 2018 and WOW! Time has definitely flown by!
I began physiotherapy with my new physiotherapist on the 17th December. In Iour first session, we set some goals that I felt comfortable with. I had lost a bit of confidence in standing up with my walking frame since leaving rehab so I wanted to work on regaining that to begin with.
My other 2 goals were to focus on strengthening my leg muscles and to hopefully learn to walk with a walking stick/cane!
My Neurologist referred me to a consultant, at Addenbrooke’s, who specialises in Mitochondrial Disease. I received a letter to say that an appointment had been made for me to see this specialist 4 days before Christmas. My anxiety went through the roof, this would be the first time going back there since I was transferred there back in March.
I really contemplated about whether or not I should attend however I needed to know if I actually have a type of Mitochondrial Disease or not. Throughout my hospital stay, my family and I were told that I may have a form of Mitochondrial, yet I did not receive an official diagnosis.
After much debate, I decided it was best for me to attend. Mum took me to Addenbrooke’s on the 21st of December and honestly, I surprised myself.
The specialist and his colleague were absolutely amazed yet baffled at my progress. Going over my medical files, they still couldn’t give me a firm diagnosis BUT they assured me that they were going to get to the bottom of it. Now, I am waiting to undergo further tests.
After my appointment, I piped up and said to Mum, “I want to go onto the ward”. Mum looked at me, hesitant, “Sure?”. I nodded.
We got lost but we finally got directed to the right ward. Upon entering, my heart was in my mouth, I didn’t recognise anything until I saw a window. Behind the window was a room. A side room in which I stayed in for about a week. My time, in the side room, was the most frightening for me. I had a seizure. I vomited quite a few times.
Mum continued to wheel me past the door to the side room, various equipment and then a sea of staff nurses. Everything came flooding back as I saw the numerous beds. The ward appeared so much smaller than what I remembered. One of the nurses’ recognised me, I vaguely remembered her. Then the rest of the staff started to crowd around me and look at me.
I wasn’t being rude but I couldn’t help but stare at the corner of the ward, it was the bay that I was in for a while. There was a man, in the bed, with so many machines around him. I stared at the wall, beside his bed, remembering having my pictures placed upon them. That’s when reality hit me and I started crying.
I know I say it so many times but I honestly don’t know how I survived it all. I had no strength to fight.
My visit influenced me to reconsider my decision about attending my ICU review. I had been putting it off and putting it off but I needed closure, I needed answers. Mum spoke to a nurse and we were told to wait in a little room while the nurse went to find the nurse in charge.
In this small room, were a few chairs and a table. I could easily sense that this was a room that bad news was told in. It was unsettling. Mum had tears in her eyes, so I asked, “What’s the matter?”, “This is the room that we were pulled into, while you were in a bad way”. “I asked them if we were going to lose you, and they said they really didn’t know”, Mum continued.
I put my head in my hands and cried even harder. I didn’t know how to respond so I just sat in silence. With tears streaming down my cheeks, waiting for the nurse in charge to come in and speak to us.
About 10 – 15 minutes later, a nurse came in and sat down. After speaking to us, she was happy to refer me to attend my ICU review.
After the referral was sorted, we left the ward. I just wanted to go home. I was hungry and so tired. Emotionally drained was an understatement. I don’t remember the journey home, I must have fell asleep.
I briefly talked about my Nan having a stroke, during discharge week. She is a tough lady and was discharged a week before Christmas!
Ewan gave me his cold so I was poorly throughout Christmas. Let me tell you, I am the worst person to be around when I have a cold – I bitch, I whinge, I moan…. I was quieter when I had double pneumonia! Well to be fair, I did have a breathing tube down by throat!
Christmas was a quiet one, I didn’t feel up to celebrating but I was just glad to be home.
I was definitely glad to see the back of 2018, but it did seem surreal at how quick it whizzed by. I was in bed before midnight so no celebrating – getting too old for that shit!
I was absolutely determined to make 2019 MY year and for it to be a positive one!
Mum received a reminder text from Addenbrooke’s about my ICU review on the 9th January… but I hadn’t received an appointment letter. So, Mum cancelled and asked for them to send me another appointment. A few nights later, I had a dream that I got the appointment on my birthday.
The next day, when the post arrived, my appointment letter came through. I shouted “I bloody knew it!”
Sure enough, it fell on my birthday!!
Sadly, on the 20th January, my lovely Grandad passed away. He was 99. He had an amazing life. He was very family-orientated and full of love. It brings me comfort knowing he is reunited with my Nan. They were together for over 70 years!
On the 23rd, I turned 24 and attending my ICU review wasn’t exactly how I wanted to celebrate but I wanted to get it over with. You can read all about my review, here.
By the way, I also chose my wedding dress!
In February, I attended my Grandad’s funeral with Ewan and Mum. It took us 4 hours to get there and back home. It was nice to see my family but I wished it could have been under better circumstances. I couldn’t help but feel guilty throughout my time at the funeral.
When my family began to exit the crematorium, I was sitting at the end of the 2nd row. They hadn’t seen me since everything that had happened last year, I think the last time I saw them all together was at my Nan’s funeral which was 7 and a half years ago.
They all held my hand as they left, and said a few words to me. I felt bad because the attention was supposed to be on celebrating my Grandad’s life, not me. I could feel everybody’s eyes on me.
We left the crematorium and waited outside; it was sunny but there was a gentle breeze which was nice. I watched on as the rest of my family exited the crematorium, hugging each other and shaking hands.
My family is so big that I have lost count of how many of us there actually are!
We headed to a little pub, not far from the crematorium, for the wake – thankfully it was accessible! Although it was overwhelming, it was incredible to see how many people were there because of my Grandad.
One of my aunt’s made us laugh, she is so bubbly, bless her. She started walking over to us and stopped in her tracks, it’s just how she made a point out of putting her plate of food down on the buffet table, walked towards Ewan and said, “Let’s have a proper introduction” gave him a hug, and kissed him on the cheek!
What made it funnier was when she went back to the buffet table to collect her plate, there were people gathered round and she thought they were pinching her food. I did sit there tittering away to myself!
After about an hour of catching up with my family, we had to leave as it was a long drive home. It was really lovely to see them all!
March quickly came around and I was absolutely dreading it. It was a year on March 5th since my life changed. I was very emotional as I couldn’t get my head around the fact that it was a year. I was petrified incase history repeated itself.
March 4th, 2018, was when I became unwell, started vomiting bile and fell asleep at lunchtime. This year, I just sat in my chair, watching the clock as it edged closer to 12pm and worried myself sick that it would happen all over again.
Thankfully, it didn’t.
Although my recovery journey is the main reason I started my blog. I have more aspects that I would like to talk about but I’ve been told that I need to move on from what happened.
Yeah… easier said than done! I can’t just forget everything that happened, and actually I don’t want to forget it either. Hmm… this has given me an idea for a future post so I will delve into it more!
Towards the end of March, I met my wedding hair and makeup artist, Marie! I had already been speaking to Marie on Facebook so she knew about my communication issues. I was apprehensive when she arrived as 99% of people that I have come across, and they have been told I have hearing difficulties, they are still ignorant and carry on at their speed.
But Marie was different, she actually took my needs on board and listened. She spoke very clearly and still treated me like any other bride-to-be.
Sorry for the blurry photo, it’s difficult to hold things still with Ataxia.
Marie has become a very special friend to me who I cannot imagine life without. She really is an awesome superhero!
April has been, by far, the most difficult month of my recovery. Especially for my mental health.
It was 6 months since I saw my neurologist so I was due for a routine check-up. He was so pleased with my progress and asked if I was doing OK in myself, which I was at this point. Ever since I was diagnosed with Ataxia, back in February 2018, I was never told which type I actually have. So I asked my neurologist, he is most certain that I have Sensory Ataxia.
I was glad to finally know!
After a few more minutes of discussing different things, it was time to go – the next time I see him… I will be a married woman!
After we left the room, we headed to the ward where I was a patient for 8 weeks. The nurses I knew, were all on their day off but I did see my old physiotherapist. He was super proud of me and gave me a hug. I really have missed these guys!
Coming off the ward, I did get a bit tearful. I suddenly realised that I didn’t need these guys, in a nice way, anymore. I spent 8 weeks last year, completely dependent on them. Now, I’m home, I have overcome all the hurdles that everyone thought I never would. I may not be able to walk unaided, but I can with the support of a mobility aid or 2 people. And I’d happily take that any day!
As we left the hospital, I said to Mum, sarcastically, “I might as well be nicknamed ‘A Clumsy Miracle'”. She laughed, “But you actually are…”
A few days after, my mental health plummeted. I had no idea why at the time. I tried my hardest to keep going but I just lost all interest in everything I liked doing.
I achieved a huge milestone, one that I never thought I would be able to do ever again due to my communication issues. I applied for a job, and I got to the interview stage.
Unfortunately, I wasn’t successful – this was not due to my communication issues in any way whatsoever. But I was bloody proud of myself for completing an interview, albeit Ewan relayed all the questions to me but all the answers came from me.
Ewan and I had already planned ahead that we would go and see Avengers Endgame – I was nervous as this was the first time I would be going to the cinema with my low vision and as a disabled person. It was so fucking good! You can read my review here!
The day after we saw the epic, I became really tired and still had a bad headache from the speed and flashing from the film. I lost all my energy and it made me feel really low. I couldn’t even do any physio; I just had to rest and stay in bed. That was the first time I experienced severe fatigue and it made me reconsider all my future plans.
I was meant to be going to see Westlife in June, with Mum, my sister and my niece. It took me over a week to completely recover and get my energy back – well the amount that is ‘normal’ for me. Because of this, I made the hardest choice by admitting that I could no longer go and see them in June.
This broke my heart as I grew up going to concerts, to see Westlife, Boyzone, Ronan Keating, McFly, etc. and suddenly realising I would not be able to cope with going to a concert again… I just can’t describe the feeling. A very big loss.
All of what had happened over the last few weeks, led me to having a mental breakdown. Toxic people didn’t help matters. I wanted to give up everything, physio, volunteering and even my blog.
Ewan suggested I take a break from everything, which I did and it was the right thing to do. I was still about on social media but nowhere nearly as much as I usually am. The time I had spent away from everything really opened my eyes as to how much social media affects my life… again I will delve into this more in a separate blog post.
May, I was determined to come back stronger than ever!
I have to mention this as I have found an entry in my positive diary – even though I can’t remember writing it in but it was definitely something worth remembering and laughing at! A lot…enough to make me cry laughing!
Thursday 9th May – Laughed at Ewan
I always laugh at Ewan, and vice versa but this one time, ahh I’ve never laughed so much at him! I will set the scene…
I can’t even type because I’m crying with laughter already!
Right…so I have my bed in the living room (currently waiting for stair-lift). I was sitting on my commode as I had just finished having a wash. So, my commode was next to my bed, which is against a wall. Ewan has size 12/13 feet and he is forever tripping over things or catching his foot!
He started to walk between my commode and my bed but in the process, he caught his foot on the back brake and tripped… which made him fall onto my bed and head-butt the wall!
I had my back to him so all I saw out the corner of my eye was him falling onto my bed, which I said, “What are you doing?’ He replied, “I tripped on the bloody brake” to which I started laughing! He started rubbing his head and I asked him why, “I hit my head on the wall…” I was howling with laughter and crying for a good 10 minutes, probably longer!
I know I shouldn’t laugh but it was so damn funny!
Scope reached out to me and asked if I would like to be involved in a very exciting opportunity! I will be keeping my lips peeled for now!
One morning, I was scrolling through Twitter and came across a thread where the user asked for others to share who their favourite disability advocates are. I read through them and agreed with the advocates that had been mentioned – they are bloody fantastic!
An hour or so later, I received a notification saying that the beautiful Jazz had mentioned my name in the thread! I cried, I don’t advocate for disability anywhere near the amount that the others do but I try my best and I plan to do more! Jazz well and truly made me smile!
So, over the last 6 months of physio, my legs are getting a little bit stronger, I can now stand up unaided as long as someone is standing right in front of me! I’m not plodding my feet as much now. Still a long way to go so I say… bring it on!
Over the next 6 months, I have quite a few exciting things coming up! In June, there is a launch of a new project that I’m involved in! An amazing opportunity with Scope! Ewan and I are teaming up for an event in August! Oh…Ewan and I are getting married in September!
As always, thank you so much for joining me on my recovery journey and I’m looking forward to sharing the next 6 months with you al!