2019 has absolutely whizzed by! I mentioned in my November Round Up that I would be taking a break from blogging this month, mainly due to November completely draining me and I wanted to tidy up my blog and give it a fresh new look for 2020!
International Day of Persons with Disabilities
I was fortunate to have This Is MedTech reach out to me and ask if I would like to be featured on their blog for International Day of Persons with Disabilities. This Is MedTech shares real-life stories which involve medical technology and how it helped a person’s treatment, etc. To this day, I’m still immensely grateful for all the medical technology that was involved in my treatment and recovery. You can read the full article here.
“Meanwhile, she had lost count of the medical technologies being used to investigate her illness and seek a diagnosis. These included blood tests, ultrasounds to look at her internal organs, electrocardiograms to check her heart’s rhythm and electrical activity, eye tests which confirmed that her optic nerve was severely damaged, and hearing tests that verified major hearing loss in both ears. However, the cause remained a mystery.”
Presents All Sorted
Mum and I went to King’s Lynn so I could get the last of all our nieces and nephews Christmas presents, and hopefully a couple of presents for Ewan too. Shopping for a football team (the number of nieces and nephews that we have) was confusing to begin with! But I quickly got into a routine for choosing clothes for one child at a time. Primark was the PERFECT place to get it all done in one shop, and under £50 too!
I managed to find a few gifts for Ewan which he will LOVE (I detect sarcasm there).
I was a good girl this time, I didn’t buy anything for myself. I’m just waiting for the sales in the New Year hehe…
The day arrived in which I would hopefully find out more about Mitochondrial Disease. It was a long and emotional day, Mum and Ewan came with me. The consultant we saw, was the one I’ve seen since I was critically ill, I remember seeing him a few times on the wards. He is an absolute diamond, very understanding and compassionate.
First, he asked how I had been and if I had made any further progress with physio. A quick recap of our wedding day and that I can stand up unaided for a few minutes, but still require someone standing in front of me. Overall, he was very pleased and amazed with my progress.
Then things became very medical related…
The consultant confirmed, that from my muscle biopsy, they had found a mutation (this makes me part of the X-Men now, right?) In my SDHB gene. SDHB heterozygous mutations are known to increase the risk of developing Pheochromocytoma/Paraganglioma Syndrome, basically meaning I’m at higher risk of developing a tumour(s), but at a later age. This is what my consultant said.
However, I do not present, currently, any symptoms which are commonly shown with this – he also said there is a possibility that, even though I have this type of mutation, it could be likely that I’m the first person to have this and not experience any effect from what it can lead to, as to someone who DOES experience symptoms associated and develops tumours.
Its mind-boggling. I’m not sure how to feel to be honest. I’m worried about the further tests that need to be carried out. My parents need to be tested. I know Mum will have the test done without hesitating, but as for the other parent… I’m not going to even go there because once I start, I won’t stop. One word, selfish.
So, he has referred me to a special specialist (someone higher than him) to tsll us more information.
Anyway, carrying on, I admitted I was scared because I’d read up about Mitochondrial Disease, and all I’ve read is that its progressive. He shook his head and reassured me that not all types of Mitochondrial are progressive, people can live a full life. I admit, I did think ‘Yeah, but a full life of a lot of limitations’ but that was me feeling defeated.
I went on to ask about children, is it safe for me to carry? Does this lower my chances of conceiving? The consultant said that nothing is stopping me from having children, however, I would need to be checked closely to see if my organs are strong enough to carry. Also, as there is a chance of passing on this gene, it would be best not to conceive naturally. Nonetheless, he has referred me and Ewan to a midwife so that we can discuss all options.
I know this is going to be a complicated journey, like I say, I don’t know what to feel. Overwhelmed is an understatement, as is terrified. I’m just very grateful that there are options and the understanding from consultants.
Learning to Breathe Again: Part 3
The next part of my journey, Learning to Breathe Again: Part 3.
“The male nurse began writing on my whiteboard, I was looking at Ewan thinking, “Oh God, what now?” When the nurse turned my whiteboard around, so that I could read it, I was taken aback and tears filled my eyes as I finished reading what he had written.”
I still can’t believe this, UndercoverSuperhero has, somehow, been seen over 15,500 times! I really don’t know what to say apart from thank you all so much, I really am grateful for every single one of you sticking by me throughout my blogging journey, and long may it continue!
This was completely unexpected, Thor went to the rainbow bridge on the 10th… I really miss him, well I miss them both so much. I’m still trying to focus on the fact that our boys are reunited, popcorning and enjoying all the veggies up there.
I’m not ready to adopt any more Guinea pigs, I’m not sure if I will ever be again, but one thing is for certain, I believe that if we were meant to have only 2 Guinea pigs, then I’m glad we had Loki and Thor. We were meant for them just as much as they were meant for us.
I feel lucky to have been a Mum to these 2 handsome and gorgeous boys. I will never forget them.
I thought I would really struggle with physio, considering what happened to Thor 2 days ago. But when we entered the gym, I saw a few new mobility aids, mainly standing aids and walkers/rollators. Then I realised this man had bought them in for another patient to see what best suited them. I was gutted.
I think the man caught on to my disappointment and spoke to my physiotherapist. He showed her a catalogue with different types of walkers, and my physio had a quick look before pointing to one. I didn’t realise this guy had a van full of them! He only went and got me a 4 wheeled rollator out of his van and let me try it out!
I was a bit giddy, and in a way, relieved as I know I needed to focus on physio so this was a good opportunity to distract myself about Thor.
The rollator had a very sleek, black design. I could automatically feel a difference with my posture, I felt like I didn’t need to put much weight on the handles, like I do with my walking frame. It was really confusing to walk with at first, as I’m not used to having to squeeze the brakes, then walk a step, release the brakes then move it forward slightly, squeeze the brakes and bring my other foot forward. Gosh, it frazzled my brain!
But it was a really good test-drive! My physiotherapist has applied for funding, so fingers crossed I may be getting one next year!
I Voted for the First Time
I hold my hands up and will admit that before I became disabled, I didn’t care about politics as it was all too confusing. However, since my health deteriorated, I realised how much we needed a stable Government. I’m still learning about politics, it’s a minefield! Anyway, after reading about the NHS being in trade-talks with Trump, I was livid – I wasn’t going to sit back and watch that smug, egotistical being get his hands on the NHS!
Ugh, don’t even get me started with how I feel about Trump!
Needless to say, that’s why I voted, to save the NHS, for the disabled community, for education and our welfare. I thought of the many, not the few.
Physio was the Best Ever! But the Shortest Too…
Well, my last physio session of 2019 quickly came by! For once, I didn’t know what to do in physio as my physiotherapist usually has a plan, but this time she asked me what I would like to do. I wanted to try something that I hadn’t been able to do earlier this year. But it never ended well when I tried to do it.
I wanted to get on my hands and knees.
So, on the plinth, I laid on my back, bought my knee up so it was bent, rolled onto my side, shuffled a bit further away from the edge so i would have more room, then rolled onto my front.
That didn’t take as much energy as I’d anticipated.
Once I felt strong enough, I lifted my bum and bent my knees at the same time – this is always hit and miss as 1) I can’t do two things at once and 2) It depends on how strong my legs are. Well, it all happened quite quickly! Not much pain, just a bit unsteady.
So, at this point, I was on all fours, except I was using my forearms to support myself. Again, it was hit and miss with my hands/arms as it depended on how strong they were.
Well, bugger me, I pushed myself up with my hands quicker than I had expected to! Plus, I could bear the weight!
I was taken aback, well i think all 3 of us were, at how quick i had managed to do it, and with little help! My physiotherapist wanted to try something, she likes to challenge me, in a good way. She bought the head of the plinth up so that it was, almost, at 90° angle. But I managed to shuffle down the plinth, otherwise my body would be at a unnatural angle!
Anyway, once it was set in position, I, very slowly, bought one knee forward, then the other, to crawl up the plinth. Once I had reached the angle, I lifted my head up to see where I could place my hands. Theres a hole, for where someone can place their head if they were laying on their front, I grabbed the edge of that and bought my knees a bit more forward.
At this point, I was kneeling but sitting on my feet. I struggled to do that even when I was able-bodied! We all looked at each other, thinking “where on earth did this come from?!’
I was hesitant to try anything else, but I thought, ‘Fuck it! What else am I capable of doing?’
I placed my hands on the edge of the plinth and pulled myself up, so now i was just kneeling and resting my hands on the edge. My lower back began to start aching. Bugger! Then we realised, “How am I going to get back into a sitting position?’
My physiotherapist came up with a plan quite quickly, thankfully, as my back was starting to become very painful! Plan of action was for me to shuffle on my knees to the side, which my Mum was standing, rolled onto my left side so I was then half sitting on my bum. Stretched my legs out and shuffled until I was sitting on my bum completely.
I did it! Woohoo!
Bloody hell, I knew about it when I tried to stand up! My legs were shaking so much and it took me over 10 minutes to muster up enough energy to even stand. My physiotherapist had to support my knees while I transferred back into my wheelchair, incase my knees buckled.
But yeah, that was a short but a great session to end the year on!
Mum and I headed over to the unit, to give out christmas cards, and hopefully see my favourites! Which I did, well except one, he had gone home early. So, if he reads this – thank you again for all you’ve done for me, i hope you have a lovely Christmas and I’m sure you’re looking forward to seeing me again next year! I do love our banter!
Anyway, I saw Grace first, and we had a quick catch-up. She asked me if I had seen the article, about our donation presentation, on the hospitals website, to which I had not. I will explain more about that below. We just continued chatting and having a laugh, then she had to get back to work.
The Sunshine Blogger Award
Mathew, from Blog of the Wolf Boy, nominated me for The Sunshine Blogger Award, he is an awesome and talented guy! Thank you Mat!
The Opposite Perspective
Pete, the man behind beetleypete, is a fantastic write and if you love short stories, then I highly recommend following his blog. Every serial that I’ve read, since I came across his blog, has captivated me from start to finish.
I was thrilled when Pete asked me if I would like to write a guest post for his blog. I really enjoyed writing The Opposite Perspective: I’m Meant To Be Disabled.
Don’t get me wrong, I usually enjoy Christmas, but this time around it was absolutely shit. So many people kept saying to me, “I hope you and Ewan have the perfect Christmas as it’s your first one as a married couple!” Seriously, I lost count how many people said that…
Well… it wasn’t. Too much pressure and too many expectations of it being perfect. I had a lot of resentment this year, but all that matters is that the little superheroes loved their presents.
Oh well… try again next year, eh?
My Review of 2019
I can’t believe it’s the last day of the year! This year has gone by so quick! It was really good to look back on what’s happened this year, despite a few negatives. You can read about my 2019 here.
Thank you all for sticking by me throughout this year. I really hope 2020 is kind to you all! See you all in 2020!