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Is it just me or does February always seem to fly by quickly? Let’s take a look back at what happened this month.
The Reality of…
Nyasia raises awareness of Cerebellar Ataxia, and shares with us how she came to be diagnosed.
“Ataxia affects everyone differently. Ataxia affects my balance, co-ordination, vision, and my strength. I am shaky a lot when I walk” – Nyasia.
I Was Gifted A Compliment!
Rory, a bloody awesome blogger, kindly gifted me a compliment – this is Rory’s way of praising fellow bloggers because he enjoyed their post. I absolutely love this concept and I was ecstatic when Rory gifted me! It’s similar to blogger awards, but different in that you don’t answer questions or nominate other bloggers. It’s purely an act of kindness, which we need more of in the world!
I Had My Best Physio Session To Date!
I thought I had ran out of hope, considering what I’ve been through and how far I’ve come – don’t get me wrong, I feel very lucky to have the mobility I have regained, but I genuinely thought that walking with my frame or with assistance would be my limit. I accepted that I could do no more than that.
But this physio session gave me a new hope (No, this is not a Star Wars reference).
I’ve finally got the hang of standing up from my wheelchair without tipping the wheelchair back. This has taken months for me to grasp as I was not confident enough to stand up without my legs touching the seat of my wheelchair. I really do need to have more confidence in myself.
But it wasn’t that, which gave me hope…
My physio encouraged me to try something new. She wanted me to try and transfer, from my wheelchair to the plinth, with my walking frame… by myself, nobody holding on to my transfer belt…
Yikes… was my reaction. Yes it was only transferring at a 90° angle, but I’d never done this before, independently. I was nervous. But I wouldn’t know if I didn’t try.
I got my feet into position, which can take up to 10 seconds as I need to make sure my feet are staying still ready for me to stand. They were a little jittery as I was nervous. Once I felt ready, I stood up and held onto my walking frame. I have a slight tendency to be cocky and try and move a little quicker – but it always backfires as I end up losing my balance. So, I told myself, “No, you will take your time with this, there is no rush”.
I took a deep breath and started to take steps, my physio was supervising and was still within a metre of me, but not holding on. So far, so good. I began side-stepping with my frame, to turn so that I was standing in front of the plinth. I made sure I still felt I had control of my balance, and then lowered myself to sit on the edge of the plinth.
I done it! I bloody well done it! I couldn’t stop smiling!
I had a drink and a few minutes break, before we decided on what I could do next. I do get tired very quickly and need regular breaks.
Finally, I chose to do some walking with my frame, and the support of my physio holding onto my transfer belt. Again, she wanted me to try something new; to not put as much weight on my frame, as you can see the whites of my knuckles when I’m holding onto my frame for dear life
Double yikes! I knew I would struggle with this, but I wanted to give it a go.
It’s become a habit that I hold on tightly, so it took me a few times to try and loosen my grip. After about 5 steps, I noticed that when I’m balancing on my left leg, I’m able to loosen my grip and use the walking frame as a guide, but when I’m balancing on my right leg, I had to tighten my grip and use the walking frame to support me, my right leg is weaker than my left.
But in a roundabout fashion, I half-done it! I was chuffed with myself; half is better than none! After a few more attempts, we ended the session. While my physio and Mum were looking through their diaries to sort out more dates, I was sitting in my wheelchair, reflecting on the session.
That small difference, by loosening my grip, gave me hope that I may walk unaided one day. And, after everything, I really thought that it would never happen again. But now, who knows? I’m curious as to what I could do in 2 years’ time!
My New Favourite Jumper
I thought all the sales would have finished by now, but George (ASDA) had a huge sale on, so I had a little nosey. I found a few bargains, something for Ewan, a set of bras’, and this awesome jumper! It is so damn comfy! It is baggy as I don’t like close-fitted tops/jumpers. Isn’t it awesome?
For the first time in over 2 years, I actually received a near-positive test result! All of my previous MRI’s showed abnormalities and what not, but my latest scan showed wear and tear, it was mainly to check on my conditions , like Transverse Myelitis. My neurologist reassured me that it is settled/stable and only shows wear and tear. Woohoo!
The A to Z of Me
This was another post I wanted to update, mainly for new readers. I think it’s the type of post where I will update it yearly, depending on if anything changes. Nevertheless, it was really fun to do! Plus, I enjoy alphabetical lists!
My New Badge
For several months now, I’d been wanting to have a badge with my logo on – I had a look at a few shops on Etsy, where I buy badges from, to see if they do personalised badges. I decided to go with Jo Hooper Prints – I absolutely love her shop! After a week or so, I received my badge! So, pleased with it! I will be buying more at some point to give away to anyone who would like one!
The Reality of…
Ashley tells us about living with Major Depressive Disorder, and explains the various symptoms she experiences.
“Anhedonia, the clinical term for lack of pleasure and interest, is kind of a slow burn day to day but has really drained my life of any colour that it used to have.” – Ashley.
It has been 1 year since my rehab review and I can’t believe how quickly this one came around! It started of really well, I was telling my rehab GP about the progress I have made in physio. Overall, it was a really positive review. Until a certain topic was mentioned and I just started crying.
I did explain that Ewan and I have sought advice from various medical professionals about whether it’s safe for me to have a baby. I think all the emotions from the last 3 years crept up on me, because I was convinced I could never be a Mum. Now, there’s a chance I can and, I don’t know, I think I just felt really overwhelmed.
I’ve not really had the chance to talk to anyone about becoming a Mum – I only know 1 disabled Mum and the rest are able-bodied. I didn’t want to burden 1 Mum with a load of questions. I really should try to reach out and ask
Side note: I’ve since spoken to Fi, and she has been amazingly supportive and has been happy to answer any questions I have. She has been kind to share her experiences with me, which has helped my anxieties about pregnancy and once baby is born.
Hopefully a little Avenger will be in the picture soon!
Anyway, back to the review, I just blurted out all my feelings and ended up feeling like an irresponsible person – I felt like we hadn’t done enough to find out all the information there is (but we have enough for now). I felt a bit better after a good cry.
I asked if I could be weighed, which had to be done by a ceiling hoist. I’ve put on 3kg since I was last weighed in June! I know it’s not a lot but it knocked me a bit, I know what has caused it though, the bloody digestives! I struggle to lose weight now I have limited mobility.
Why I Created ‘The Reality of…’ Series
In a few weeks, the 50th guest post of the series will be published. I’m incredibly grateful to every single one of you who has shared your story and raised awareness on my blog. I wanted to reflect on why I created the series and the impact it has had.
The Reality of…
Carrie-Ann shares with us that despite the barriers that come with her disability, Cerebral Palsy, there is always a possibility. She also tells us that she enjoys inspiring fellow disabled people to travel.
“I was brought up to always find a way – hence the knee walking – to look at a barrier and see how I could get around it.” – Carrie-Ann.
Handed Final Cheque Over
I know we should have done this back in November, we had the cheque ready, we just didn’t have time to go to the ward and hand over the cheque. If you’re wondering what I’m talking about, Ewan and I decided that instead of wedding gifts, we would ask guests if they would like to make a donation, which would be split between the ward I stayed on for 8 weeks, and the physiotherapy and occupational therapy department, at rehab where I was an in-patient for 6 months.
It was lovely seeing a few familiar faces, we had a quick catch up before we had to leave to get the train to Cambridge.
This was the appointment, the big one, that I mentioned about back in December. First, we went to find the woman who I briefly met at the end of my appointment (back in December) as I’m taking part in their research and it was arranged that I would have a blood test when I next had an appointment.
It took us a while to find the right department but we got there! We all headed to the clinic and had to wait just under 10 minutes. I was absolutely fine going in; I’ve had enough injections in the past 2 years. I sat in my wheelchair, waiting for the nurse to find a vein…
More prodding and waiting…
They found one! Oh wait, no, false alarm.
It felt like a lifetime, I’m fine when they can find a vein straight away but it’s when they continuously prod for a good 5 minutes or more, that panic sets in. My head felt heavy and I started to lean to one side. My eyes started closing and everything started to fade. If that nurse hadn’t found a vein in the next 10 seconds, I would have completely passed out.
I was extremely disorientated and shaky, and I almost threw up. Worst. Blood. Test. Ever! I was quickly wheeled outside and focused on controlling my breathing. I did have a little cry; I haven’t had a blood test in over a year which didn’t help my anxiety.
The woman did want another sample, but I really didn’t want to have round two so soon. So, when I next go to Addenbrooke’s I will have another blood test. Hopefully they find a vein a lot quicker!
Anyway, back to the appointment. This was with the specialists in genetics. I knew it would be a big appointment but not to the point of information overload! We were in there for 2 hours.
First, the specialist wanted to know my medical history and my family’s medical history. That bit was easy enough. Then we were hit (not literally) with loads of information.
I have a mutation in my SDHB gene, which is a tumour-suppressor. However, this is not enough to explain why I have all these conditions. Also, we are back in limbo with a diagnosis of Mitochondrial Disease – I need more testing. We were told this gene has a 25% chance of causing tumours.
As a result, I will need to have full-body MRI’s every 1 to 2 years as I’m now under ‘tumour surveillance’.
So, we are back at square one not knowing what’s caused all or each of my conditions. I think I’ve reached a point where I don’t want to be hell-bent on finding a diagnosis – it’s not that I don’t care, it’s just I don’t want to live the rest of my life fighting for a diagnosis when I could be living my life. If they find a diagnosis, great! If not, well that will be okay too, I will accept that.
We asked if this faulty gene can affect fertility, which it doesn’t, but there is a risk that our child would inherit it. This was the last question we wanted to ask, with regards to starting a family.
Before we left, the specialist asked if I could do a urine sample and a spit test. I’d never done a spit test before and it was awkward trying to do it with 3 people watching. Plus, I had my false teeth in which made it harder to spit! After about 20 minutes I eventually done it!
But on the train home, a thought occurred… Bugger, would Poligrip have ended up in the sample?
Niece Said “Hello Ami”
One of my twin niece’s has been saying my name for months, and now my other twin niece has started saying my name. Mum was babysitting one morning and she sometimes brings them round to see me. My niece came in waving and said, “Hello Ami”. She said it clearly for me to realise what she had said. Proud and happy Auntie right here!
The Reality of…
Glen raises awareness of his vision impairments, Aniridia and Nystagmus. He also tells us the support he has received, transitioning from a child to an adult and some of the aids that are helpful to him.
“As I was born with my conditions, I don’t feel like I’ve ever lost anything, because I’ve never known any different. My eyesight has always seemed normal to me.” – Glen.
For several weeks now, I’ve been having urges – to walk by myself unaided. But I know for my own safety, I can’t. When I do my physio exercises at home, like standing up with my frame, I so badly just want to try and walk with it by myself. I felt a bit more confident after my last physio session as I managed to transfer by myself.
So, I took a chance and walked from my recliner, to an armchair which is 1 metre away, with my frame.
Mum was upstairs so I seized the opportunity. I stood up with my frame, took a few deep breaths and started taking steps slowly. It was nerve wracking but I just really wanted to try. I’ve never concentrated so much in my life! The bit where I had to turn around/side step worried me, as I tend to wobble more. But I really focused and managed to do it slowly and calmly. Once I had my back to the armchair, I sat down.
I did cry, this was the biggest milestone in all of my recovery! I was speechless and I couldn’t stop smiling!
A few minutes later, Mum started to come down the stairs and I saw her stop. I knew she was thinking, “Hang on, Ami was in the recliner… and now she’s not…” When she saw I was sitting in the other armchair, she started smiling and said, “I wondered where you bloody went!” we laughed.
She went into the kitchen, and I walked back to my recliner. She was a while in there, which was good as I wanted her to look confused when she came back in the living room to see I was sitting back in my recliner. My mischievous tendencies have never stopped!
I’ve Got A New Walker & Bloody Potholes!
I received an email from my physio, telling me that my new walker (rollator) had arrived! This was the walker I tested back in December and really thought it improved my posture when walking. It took my physio about 5 minutes to attach the little add-on and adjust the ‘slack’ of the back wheels (basically, tightening some bolts to make the wheels move slower).
I had a good half hour walking with it (not continuously, I need breaks to regain some strength).
As it was new, I permanently tightened my grip on the brakes as I was worried it would roll away. My physio wanted me to try and take steps without using the brakes at all. Good lord, she loves to test me!
Again, I just told myself not to rush, and to take it slow, as much as I needed to. I thought I had done really well, I managed to walk a couple of metres, my physio was pleased too!
On the way home, we had to make a diversion as there was an accident. I forget how bumpy country roads can be! I’d never been this route before, and if I had, I would have told Mum to avoid this road entirely! Mum turned left after a junction, and immediately we were met with potholes. The cars on the other side hadn’t left enough room so that oncoming traffic could avoid the potholes. And because she had just turned a corner, we couldn’t go any slower than we were doing.
The first one wasn’t too bad but the rest, my goodness. They were the biggest potholes I had ever been over.
They completely knocked me, caused me to be disorientated, dropped my phone, and my neck and back seized up. They were bloody nasty!
I struggled to move my neck for a while and Mum wanted to take me to the doctors to get checked over, but I just wanted to go home and rest. I was in a lot of pain, and had a horrible headache. It’s taken me 6 days to be pain-free from this. I wish I knew the name of the road so I could tell people to avoid it.
Time flies! 3 years ago, Max and Molly became officially ours! We rehomed them from PACT, in Dereham. They have bought so much love and laughter into our lives, and I can’t imagine life without them.
Molly has become a mini carer, she gets up as soon as I ask to go to the toilet, she follows me to the toilet most of the time. She sits by Mum ‘s side when she cleans me. She has the smelliest farts, worse than Ewan’s! She loves cuddles and kisses, and always has a squeaky ball nearby.
Max is such a loving dog, he is a Mummy’s boy, and is always cuddled up with Mum. Occasionally, he does come to me for cuddles, but he forgets that he is a bit bigger than Molly and tries to fit in a small space. But he is so lovable! Here are a few photos and videos of them.
Honestly, I never plan for these monthly round-up to be this long, so if you’ve made it to the end of this, then you deserve a noddy badge! Just kidding, but seriously thank you for reading
What’s Happening in March?
Currently have 2 more guest posts coming your way, in ‘The Reality of…’ series, if you’d like to raise awareness and feature in the series, then head over to my contact page to send me an email. Ewan and I are heading to Birmingham for Naidex! So excited for this, and I get to meet lots of my friends who are disability bloggers. Will take lots of photos!
I’ve been thinking about the outlook of my blog, I’m not deleting it but I just want to change things a little. I’ve decided that some posts will be planned, and some won’t be – sometimes I just want a place to share how I’m feeling. I miss being spontaneous with writing so I want to bring that back. I am hoping to get another chapter of my recovery story published, I’m just having trouble remembering a few bits so it’s taking me a bit longer than I thought – sorry!
How has your month been?