Hey superheroes! How have you all been doing? Settled into the new year okay? If yes, great! If not, don’t sweat it, we can try again next month! So, what’s been happening in January for me?
My 30 by 30
This post was originally titled ‘My 25 by 25’ and I made this list when I was almost 24, which meant I only had a little over a year to achieve everything – yeah, ain’t going to happen! I decided to be more realistic and change it to 30. Bit more time. I like to share some light-hearted stuff, not only to cheer myself up, but just to spread a little positivity out into the world. If you would like to have a read, then head over to My 30 by 30.
I Was Nominated For Something Big!
Gosh, I was not expecting this, if ever! My lovely friend Hannah, from Hannah’s Hope, very kindly nominated me to be on the Shaw Trust’s most influential disabled people #Power100 list! I’m still flabbergasted at this!
I did have a minor blip where I convinced myself that I’m not doing enough to raise awareness, but I’ve never had any faith in myself. Just being nominated means the absolute world to me!
Went to Norwich
I really hoped to catch some of the January sales, which I did but there wasn’t anything decent so the things I bought were at their normal price. Sigh. We went to Primark, which they’ve moved back to the building it was originally in. If you’ve been to Primark in Norwich, I’m surely not the only one who thinks we need bloody Sat-Navs to get around the store and find where everything is, right?
Anyway, Mum was pushing me through the aisles, and I spotted some yoga mats – not for yoga but for physio at home. Lightbulb moment here! I hoped it would help ease the pain in my knees when I’m balancing on my knees. It was under a tenner, and they had some in my favourite colour, so I thought why not?
Side note: I have used the yoga mat to do physio on, and it is so much better for my knees!
I bought some Lion King and Powerpuff Girls socks for myself, a couple of t-shirts each for 2 of our nieces’ birthdays. Oh! And a Tom & Jerry t-shirt! I think that was it from Primark. Oh no, of course I bought more leggings, how could I forget them?!
Then we went into Chapelfield, I cannot go past the Disney store without not going in, even if I don’t plan on buying anything.
I’ve been going to the Disney store since I was little, and I still love it! The second you enter the store, it’s just magical and it really is heartwarming seeing all the younger kids smile and dance, and be amazed at all the merchandise. It’s very nostalgic for me and I think that’s why I love it there. Anyway, I didn’t buy anything, it can be a bit pricey in there!
Last but not least, we went into my favourite shop, I always get the name of it mixed it up so I’ll just describe it – it sells all kinds of merchandise from TV shoes and films, and it is heaven! They sell all sorts, even some replicas like Thanos’ gauntlet. It’s a beauty! I bought an Avengers t-shirt for myself, and… oh, I better not say incase Ewan reads this, but something for his birthday!
It was quite busy in Norwich, understandable considering it was only a few days into the new year. But one thing that I was not expecting to happen was someone to recognise me from my blog!
Absolutely gutted as I only found out about this a few days after we had gone shopping! I would have said hello, I don’t bite – well I couldn’t if I tried because I didn’t have my false teeth in! Fellow bloggers, social media peeps, have you been noticed in public because of your blog? It was a really weird feeling for me…
I Was Nominated For The Mystery Blogger Award
My wonderful friend Charlotte, from Time to Talk, nominated me for The Mystery Blogger Award! I really appreciate the nomination! After debating for a long while, I’ve decided that I no longer wish to carry on with the blogger awards as it does drain my energy trying to complete them, especially if they’ve stacked up over time.
If I feel I have enough oomph in me, then I will happily answer the questions in your comments, but for the foreseeable future, I will not continue them on. I’m sorry but I hope everyone understands.
The Reality of…
The Reality of… series came back and starting the new year was Nikki, who shares with us her frustration of Vertigo not being properly diagnosed, and how It affects her on a daily basis.
“When it gets worse, it is frustrating because I begin to not understand people. I am too zoned out by the vertigo and dizziness to comprehend what they are saying.” – Nikki
My first physio session of 2020 and I was ready for it! Well… I thought I was. It started off well with doing some warm-up exercises, after sitting down from trying to walk with a rollator, my physio started talking to me about being referred to an OT who can help me find things to do in my free time. Then she asked me, ‘What do you actually do in your spare time?’
And I replied, “Not a lot, to be honest’… and I just broke down in tears.
I’d been dreading the day my physio, or rehab family found out the truth about what’s really been happening, or in my case, lack of. And I’ve been hesitant to open up about it on my blog because I really don’t want pity.
The truth is, since being discharged from rehab, I’m on my own a lot, I don’t go out unless it’s for physio or appointments. Where I live, it’s not suitable for my needs. I’m sick of being pushed in my wheelchair, because I do have a power chair but I very rarely use it as there’s not enough room. I can feel myself holding back my thoughts as I write this.
I’m lonely, I’m bored, I’m fed up. I hate the situation I’ve been, and still am in. I’m fed up of having my independence taken away. I’m fed up with being told that I’m top priority, yet its evident I come after everyone else. It’s bloody horrible, and I’m struggling.
So yeah, that’s why I broke down in tears. But after telling my physio everything, it felt like a huge weight had been lifted off my shoulders, to know that someone finally knows what’s been going on.
Update: I’ve referred myself for a care needs assessment, I’m putting myself first from now on.
New Loki Beanie
I treated myself to a new beanie, more importantly, a Loki beanie! I love it so much!
Respect Disabled People
The reason why I don’t go out anymore, except for physio and hospital appointments, is because I’m sick and tired of being touched, patted, and pitied. It drives me insane! Even on our wedding day, someone sat next to me and started stroking my hair – I do not like being touched, at all.
Sadly, it’s very common for disabled people, or wheelchair users, to have their personal space disrespected. We are not pets, we are humans. People need to respect that!
Why Superheroes Mean So Much To Me
I’ve been updating a lot of my old content and Why Superheroes Mean So Much To Me was one of the few that I wanted to re-share. In the last few years, I’ve learned that not all superheroes wear capes, or have special powers, but it’s the difference they’ve made in someone’s life. And I’ve met a lot of superheroes within the past 2 years!
The Reality of…
Kathy tells us about the devastating impact that ALS (also known as MND, Motor Neurone Disease), has had on her, and her family’s lives.
“This disease has affected me in the sense that I have had to give up my business, I no longer drive, nor can I dress or feed myself. I can still walk with assistance, although my balance is questionable. My entire life has changed.” – Kathy
I’ve recently started sharing the conversations I have, which usually involves me not hearing a word, or words, correctly. They make me chuckle, so I wanted to share them and hopefully make you chuckle too.
Ewan: Have you seen that new trailer?
Me: What trailer?
Me: More penis??
Another Funny One
Ewan: Am I still attractive?
Me: Why did you just ask me if you’re still a tractor?
My Cervical Screening
I received a letter a few days after Christmas advising me to book my cervical screening. I wasn’t too enthusiastic about attending mine as I have read about other disabled women’s experiences attending their screenings.
Unfortunately, it’s common that cervical screenings are not accessible for disabled woman due to not having the correct equipment, for example, a hoist to transfer someone who cannot bear weight on their feet, or muscle weakness.
Each visit to my GP surgery had caused me concern, as their rooms do not have height-adjustable beds. Which means I would not be able to safely transfer to be examined. I was dreading it when Mum phoned up the surgery to ask about a height-adjustable bed, they went on to say they do have one, and will make sure it’s available for my appointment.
Blimey, that’s a first!
Thankfully, that was the only issue I had. The examination itself wasn’t painful, I didn’t have a chance to try and think about something to distract myself, because it was over with that quick. The nurse who carried out the screening did try and explain everything to me, but she always speaks too fast, so I’m glad Ewan was there to relay everything more slowly.
Like I said, it didn’t hurt, but weeing for the next 12 hours was rather painful! When I woke up the next morning, it wasn’t painful so all good!
Update: I received my results a week later and my results were clear!
Marie Painted My Nails
Marie, my lovely friend, who done my make-up, hair and nails for our wedding, came over to do my nails – I know she’s only done my nails twice, but she is SO good! We had a good catch-up and a lot of laughs. Definitely cheered me up!
Another One For You All
Seem to be on a roll with not hearing words correctly lately…
I noticed Ewan was looking for something…
Me: What’s he looking for?
The Reality of…
Joel opens up to us about living with debilitating pain and how it impacted both his physical and mental health during the first year of being a Dad.
“My wife and I were bickering as any couple do as you try and blag your way through this crazy situation of being responsible for a new life that didn’t come with a manual – but at the same time my pain levels were increasing at a frightening rate.” – Joel
I Achieved A Milestone in Physio!
My physio really does test me sometimes – but it’s worth it! I’d been practicing at home, standing up from my chair and supporting myself with my walking frame when I stood upright, a lot and I felt a bit more confident.
She asked me to transfer from my wheelchair to the plinth, using my walking frame – but with nobody assisting me. I was nervous about this, as soon as she asked, I suddenly had flashbacks of being in ICU, sitting up with the support of about 5 or 6 people. Fast forward to now and I’m being asked to transfer by myself, well, with my walking frame.
I stood up okay, then made sure I felt in control. Very slowly, I transferred to the plinth all by myself! My physio was still near me, but she wasn’t holding on to my transfer belt, it really boosted my confidence! I managed to transfer about 3 or 4 times before having a few minutes break. Then she attached some ankle weights to my walking frame, to see if it would help me walk a bit better. Which it did, it really did help.
I was really nervous about having this MRI because the last time I had one was when I was in ICU. I really, really hate these flashbacks. It turned out that this was the least of my worries… if you follow me on social media, then you probably saw my rant.
My appointment was at 6:20pm… why so late?!
Mum already explained in advance that I cannot walk unaided and would need the bed to be lowered so I could transfer safely. We got there on time and went straight in. Once any metal bits were taken off me, we went into an area, which led to the MRI room, and they had the bed out ready. They then say it can’t be lowered.
I say there is no way I can get on that at that height. 5 times they said ‘Just try’ and I repeated ‘No it’s not safe for me and I’m not going to risk falling’. Considering I’ve had limited mobility for the past 2 years, you’d think I would know what I can and can’t do. What am I to know! They know better.
I had to transfer to a different wheelchair to be able to go in the room with the MRI. This was pointless as the bed was the exact same height! I took one look and said ‘No it’s not possible!’ But I had to prove to them I couldn’t do it.
Another thing that annoyed me was the assistants who were “trying” to help me transfer. The one behind me grabbed my transfer belt and pulled it up high without giving me any warning and I started to tip out of my wheelchair!
I was angry because there should have been a height adjustable bed/table. I’m angry with how assistants think that every patient transfers the exact same way. I’m really angry with the one that made me almost fall out of my wheelchair and pulled hard on my transfer belt while I was standing. Which made me tip back. Another 5 times I had to say I can’t get on. In the end they got the bloody hoist.
But what I’m absolutely livid with is that I had to PROVE that I couldn’t do it. They should have taken my word!
I was on the verge of crying and telling them to forget it, I’m leaving. But I needed this MRI to check up on things. Eventually the hoist arrived and I was lifted onto the bed. I was hoping to fall asleep during the MRI, but I think from all the anger, it kept me awake. It took about 40 minutes – but the whole appointment wouldn’t have taken so long if they had just listened to me the first time I said no…
After we left, we went to see the nurses on the ward, that I spent 8 weeks on, and the tea trolley lady, she’s so funny! It was lovely seeing them all and it definitely cheered me up after all the stress from the MRI.
Is it just me when it’s your birthday, you always wake up stupidly early? I wouldn’t mind if I was still a kid, but I’m now 25… y’know… I like my sleep?
With how Christmas turned out, I was dreading my birthday. But when Ewan bought all my presents and cards in, my annoyance completely went out the window! There was a rather large present, but this was Ewan’s way of getting me all excited, there was a pack of digestives and a packet of Haribo’s.
Next present was a bit smaller, but it revealed another pack of digestives and some pens.
Last present from Ewan was a much smaller present, and it revealed the one thing that I’d been wanting since I first saw it online… the Quantum suit the Avengers wore in Endgame… not the actual suit but a hoodie!
I got a Primark gift card from my best friend, India, and she made a cute little Loki card for me too!
I got 2 lovely notebooks, a nice pen and some socks from my good friend and her daughter.
I really was blown away with all the texts, messages, emails, tweets, and cards from everyone. Never received so many in my 25 years! Thank you all again for the love and birthday wishes, they meant the absolute world to me!
I thought it would be good to check out some of the Motability vehicles in Norwich. Mum phoned up the day before to double check with the dealer that they do provide Motability vehicles. We got there and there was 2 WAV’s already on show. They both were good, but I’ve always hoped to have the option of sitting in the passenger seat/area.
But the bloke didn’t understand why I wanted to sit in the front as I could sit in the back.
I will admit, I did roll my eyes. I asked about adaptations being made, and he replied to Mum and Ewan that they don’t do adaptations. I was annoyed because Mum was told different on the phone.
I’m not overreacting am I? Surely I’m not the only wheelchair user who would like the option of sitting in the passenger seat/area? Well, the search continues…
The Reality of…
The fabulous Kerry raises awareness about Muscular Dystrophy and talks about campaigning for Changing Places.
“Most people are unaware that there are 40 different types of Muscular Dystrophy that affect people in many different ways, it’s very much an umbrella disease.” – Kerry
The First Step in Finding Out if My Illnesses Prevent Me from Having A Baby
I mentioned in my December Round Up, that when we saw the Mitochondrial specialist, he would refer me to see a midwife (I now know the correct name which is a Consultant in Maternal Medicine and Obstetrics). Anyway, that’s who we went to see on Wednesday, she was really lovely. We discussed which of my conditions are causing me concern, relating to pregnancy, which were Mitochondrial Disease, Sensory Ataxia and Transverse Myelitis.
There isn’t a lot of information on pregnancy and these conditions, however she has sent me some information she managed to find with Mitochondrial Disease and pregnancy, so I will be reading that before my next genetics appointment. She checked my medications to see if they are safe to take when pregnant, from the names I remember and told her, she said they are safe to take.
At present, nothing is stopping me from having a baby, however, due to the bilateral pneumonia I suffered, nearly 2 years ago, I would need to be closely monitored – and not at a general hospital, instead it would need to be at Addenbrooke’s. During the pregnancy, I would be spending a lot of my time at Addenbrooke’s which is both daunting and reassuring that I will be surrounded by a specialist team.
All we need to do now is see the higher genetics specialist in February who will talk to us more about the specific mutation I have, and any concerns, etc. Then, we will go from there. So, who knows? Hopefully a little Avenger will be bought into the world in the near future.
The only issue I have at the moment, which is a bit funny in a way, I need to see my feet when transferring or walking with my frame… this may be impossible when my bump is so big, I won’t be able to see my feet! Hmm… this could be interesting!
Blimey, I think this is my longest Round Up to date, sorry if you got bored! Although it seems like so much has happened, it really doesn’t feel like it, which is odd!
I’ve really struggled with my Mental Health again this month, I think it’s a mixture of the situation I’ve been stuck in, the gloomy weather and just some annoyances thrown in the mix too, but as the month draws to a close, I’m feeling a bit more like myself, which is good!
What’s Happening in February?
More ‘The Reality of…’ guest posts coming your way. As I’ve mentioned above, we will be seeing a higher genetics specialist, which I will update you all at the end of the month. Also, I will be seeing my Rehab Doctor for my yearly review. Ewan and I recently applied for Universal Credit, so will see how this process goes.
What happened for you in January?