The Reality of Series is Back
As some of you may have already seen, “The Reality of…” series is back! I am thrilled about this as more people raise awareness and share their stories with us. There is a new guest post every fortnight, on Friday’s at 5pm. This month, the series has featured Georgina, who talks about chronic pain and how it began, Macy who shares her story of living with Retinopathy of Prematurity and how her experience with education was very positive, and Sean who is very candid when talking about Cauda Equina Syndrome.
If you missed the posts, not to worry, I’ll pop the links in at the end of this post.
Ah, nothing better than a spring clean, am I right? Strictly speaking, what I mean is, blog decluttering… or is it decluttering of the blog? Anyway, you know what I mean. I know I’m odd, but I find going through every post and checking for any broken links, just so satisfying! It’s just the series that I need to check for any broken links, then it will all be sorted.
Daisy (5 Months Old)
Ewan’s First Dose
Finally! Our GP surgery is rolling out vaccine’s by age group, my Mum had her first dose I think it was at the end of February or beginning of March, and she’s in her late fifties, so by the time the surgery would have started giving the first dose to people of Ewan’s age (late 20’s), it would be about June time, maybe? Ewan is an unpaid carer, and yet like many other unpaid carers, he wasn’t on he priority list. I’m sorry if you don’t agree with me, but any carer should be on the priority list because they are either caring for elderly or clinically extremely vulnerable adults and children.
Anyway, after having a little rant on Facebook, a friend mentioned that he could book online, so we tried that route and ended up booking an appointment for the Monday, which was only a few days away. He had to go to King’s Lynn to get the vaccine, which is only a half hour drive from us. Then the side effects kicked in… and I actually felt very sorry for him.
He had the same vaccine as me, Oxford-AstraZeneca, and I did warn him about the side effects. Like me, he was absolutely fine until the evening, and then he started feeling unwell, experiencing chills, etc. He went a whole day without cuddling Daisy, which really upset him, because he had no strength whatsoever. He did worry me at one point as he began thrashing his arms about and punching the wall, but it came to light that he was hallucinating as he had a fever.
He was feeling a lot better by Thursday, but he is just happy to have that extra layer of protection. So as this month, I will have received both doses, Ewan has received his first dose, and Mum will be due her second dose in May.
Managed to Transfer
After having Daisy, and the excruciating back pain I suffered with, I have been absolutely petrified to try and transfer with my walking frame, incase my back suddenly went into spasm, or if any pain started to affect my balance or strength. So, I’ve been completely reliant on my Ross Return (standing aid) for just over 5 months. When Daisy is content in her bouncer, or having a nap, then I did some standing with the Ross Return, then done a couple of squats, and stayed still mid-squat for 10 seconds.
I could only manage these 2 or 3 times a week, and I didn’t think any of this would help. However, to my surprise… it has! I plucked up enough courage to transfer from my recliner to my wheelchair, with my frame and the support of Ewan and Mum. I wasn’t as wobbly as the first time I tried previously, but I did start shaking when I was trying to get my feet in the right position so that I could sit down safely. That did wear me out and I’ve not tried it again since, but at least there is hope!
Oh, my days… I can’t believe I am about to say this but I am now a fan of TikTok. I think it was because I saw someone on Twitter share a video of their guide dog, and where it poops. Wel… obviously curiosity got the better of me and I wanted to know how a blind/visually impaired person knows when their guide dog needs to poop. Anyway, I found it interesting. So, if you’re on TikTok then feel free to send me your username and I’ll follow, or if you want to follow me then my username is @superheroami
I only have one video on there so far, well Ewan recorded and edited it. It’s of Daisy and it’s got over 650 views… which is way much more than all of my videos on YouTube, so TikTok it is going forward!
My Second Dose
On the 17th, I had my second dose of the Oxford-AstraZeneca vaccine, and thankfully the side effects weren’t as intense as the first dose so that was a bonus. From the 1st of May, I will be able to venture out into the big world again, I will still be taking precautions but hopefully it will do me some good, especially mentally. I will add the link at the bottom of this post if you are interested in reading about my experience with each dose.
Hannah and Katie Got Nominated!
Yes! Yes! Yes! I nominated Hannah and Katie for the Positive Role Model (Disability category) for the National Diversity Awards, here in the UK. They both work incredibly hard to raise awareness. Hannah, as some of you may know from the previous times I have mentioned her on my blog, is a very good friend of mine. She is a powerchair user who has Functional Neurological Disorder, Complex Regional Pain Syndrome, among a few other conditions.
She has been fundraising for several years, and currently has a year-long fundraiser throughout this year. If you want to check out what Hannah does, you can find out more on her blog, Twitter, Facebook or Instagram.
I’ve been following Katie’s journey for the last couple of years and watching her thrive and blossom into the advocate she is now has been wonderful and inspiring to watch. Katie has a progressive vision impairment, Stargardt’s Disease and is very open about her life as a mother of 2, and mental health as well. If you would like to see what Katie does, she is on Instagram, Twitter, Facebook, TikTok, and she also has a blog too.
It’s about time these two lovely ladies are recognised for their hard work and I wish them both all the best to reach the next stage!
I love Vans! Not only are they really comfy, but they also support me really well when I transfer/walk as they are quite a sturdy shoe. Anyway, I had a discount code to use so I thought I would treat myself to a new pair and I fell in love with these beauties! I’m really loving anything galaxy-styled and so far, I have galaxy joggers and galaxy shoes! Just got to find more galaxy clothing then when I’m wearing it all, I can say “I’m out of this world” Ha! Amuse me, please?
Daisy is Now in Her Big Cot
My little Daisy-doo has outgrown her Next2Me sleeper and is now in her big cot! She loves the extra room, and the bars too as she can grab them, chew on them, and push against them with her feet. Can’t believe she will be 6 months old in May!
The Long Awaited For Email
Ever since the whole pandemic began (I will shamelessly admit that I just sang that to the tune of “You Can’t Stop The Beat” from Hairspray), I have been very patiently waiting to be notified of when rehab would be re-opening it’s outpatient services again. 13 months later and I got the email! Not that I’ve been counting or anything…
I did have tears in my eyes when I was given a date, 13th May! This will only be a review but it definitely is a step closer to resuming physio sessions. Gosh, I’m so excited! I’ll be knackered but I don’t care, I just want to go back to physio so much, and see my rehab family. Literally bursting at the seams here!
This was to be my first face-to-face appointment since the end of 2019 (I think) and he wanted to see me on the 30th, which was 1 day shy of a fortnight after my second dose of the vaccine, and with the advice of continuing to shield for an additional 2 weeks after the second dose, I was pedantic and wanted a telephone appointment instead. So, that was sorted.
Anyway, my Mum spoke to him on my behalf (because of my hearing loss), and there were three things that I wanted to be discussed. Firstly, I’m overdue for a full body MRI to check for any tumours (due to the faulty SDHB gene I have) and will hopefully get an appointment come through soon. Secondly, I’m well overdue for a medication review as I’ve not had any reviewed since 2018, the response I got has shaken me quite a bit which I will go into more detail in a separate post.
Lastly, and this is the first time that I am being open about this on my blog and I’m nervous as I’ve already received backlash from being open about how I feel (not from my neurologist, he fully supports me), but I want to be honest with you all. I’m going to be assessed to determine whether I have Aspergers. I’ve been convinced that I have some traits for the last few months now, and I just want to clarify that I’m not seeking any old diagnisis just to add to the list of my chronic companions, but I feel that this diagnosis will explain why I’ve always felt so different to the people around me, and several things from my childhood which stick out in my mind.
I am very aware of how long the waiting list for an assessment can be, but either I do or don’t have it, I deserve to know at the least.
Whats Happening in May?
I’m going on an adventure! Well, not really, just my first proper outing since before Christmas, and only to Morrisons, but hey… baby steps! I might even go in my powerchair too, now that is exciting! There will be two new guest posts in ‘The Reality of…’ series, and three from me (including this one), aren’t you lucky!
Physio! Physio! Ahem… I mean a review for continuing physio sessions, I’m just so excited to get back into it! Daisy will be 6 months old… what?! Plus, we are planning to wean Daisy onto solids, so this will be interesting.
How’s your April been?
Check out this month’s blog posts: