My Experience Receiving the COVID 19 Vaccine as a Wheelchair User with Cerebral Palsy

Back at the beginning of March, I was lucky enough to get my first dose of the COVID 19 vaccine! I ran polls on my social media and my readers said they would be interested in a post on my experience of the vaccination process as a wheelchair user with Cerebral Palsy, so that’s what this post is. Before I get into the post, I would like to say that I have complete solidarity with my fellow disabled people who have been #LeftOffTheList for priority vaccination and I hope everyone is able to receive the vaccine soon.

In terms of the structure of  this post, it will be split into the booking process, my on the day experience of actually getting the vaccine and then any aftereffects I experienced.

Booking

When it came to booking my vaccination, Cerebral Palsy is in vaccine priority group 6 here in England  (something I found out via friends online who also have CP, not actual government communications *rolls eyes at the disorganisation from our government*). After a little while of group 6 being contacted to arrange their vaccinations, I’d still heard nothing.  Then my mum (who has been shielding and was therefore one of the highest priority groups for vaccination) said I could just book online with my NHS number and postcode rather than waiting to be contacted. I tried that a few times but was initially not allowed to book a timeslot. When the system finally let me in, the first thing I was asked was if I had any specific accessibility requirements (I selected wheelchair accessible, step free access and disabled toilet). I was able to select a timeslot for my first vaccination, but initially couldn’t select a timeslot for my second injection at that same vaccination centre. This meant I had to spend time researching how I was going to get to one of the other vaccination centres. It turned out that I would have to get a short train to the next nearest centre, which meant spending EVEN MORE time researching whether I could actually use that train station. By the time I’d done all of the research, the website had timed out, so I had to go through the booking process again. However, the website timing out was kind of lucky as, at the second time of asking, I was able to book both injections at the same vaccination centre which was in walking distance of my house. I then got confirmation of my vaccination appointments via text.

On The Day

On the day of my actual vaccination, I just walked to the vaccination centre. My maps took me to the car park entrance which wasn’t very helpful. There was also very little signage directing me to the entrance, until I was right in front of the building (which was named with a giant sign on it anyway). When I did find the entrance, there were actually 2 entrances, one down a set of stairs and one on my entrance level for those with mobility issues. The centre had a one way system with those waiting to vaccinated entering via a different door than the exit door used by those who had just BEEN vaccinated. There was also a socially distanced queue outside. Once I was let into the centre, I was checked in by giving my name and Date Of Birth. I was then given some hand gel and told to follow the markers down to the main seating area. Once I was down there, I was asked to sit in the open space rather than the organised seating area so that volunteers would not have to move a chair out of the way in the seating are. Usually this would have annoyed me but, in this context, it kind of made sense in terms of infection control and minimising the amount of objects touched. Then I was  told I was next up and was checked in again (this time I sat opposite someone at a desk with a computer and they moved the chair out of the way  so I could position my wheelchair. This person initially asked for my NHS number which I did not have to hand. So instead they asked for my address, Date Of Birth and some other details in order to find me on the system. I was then directed to the station where I had the injection and where another assistant at a separate computer checked me in again. Then the nurse explained the vaccination process whilst she set up the injection, and I asked her to inject the vaccine into my “non-driving” arm (aka the arm I DON’T use to control my wheelchair). I don’t like needles so I looked away whilst the nurse did the actual injection. I did bleed slightly afterwards but it was nothing that couldn’t be stopped by a plaster. Then nurse then gave me a “what to expect” leaflet and my vaccine card (which she told me to keep for when I got the second dose). THEN she asked if I was driving and this is where it got a little awkward because do I say yes or no? My wheelchair isn’t a car but I’m kind of in charge of a vehicle (I said no, but I think, since my wheelchair is a road legal vehicle, I should have actually said yes). Because I said I wasn’t driving, I was told I could go straight home without waiting to see if I had an adverse reaction.

After Effects

In terms of aftereffects , my main ones were tiredness and shivering alongside an achy injection site and general muscle soreness (I would describe it as similar to my worst days with Cerebral Palsy Spasticity). Those effects lasted about 2 days. I would say the arm soreness was the worst since I can’t actually rest my arms because I have to use them to move my walker and generally get around. I think these aftereffects probably felt worse since I am a terrible patient who has real difficulty following suggestions like “rest” and “do nothing”.

I hope this post gives helpful insight into my experience receiving the COVID 19 vaccine as a wheelchair user with Cerebral Palsy and what you can possibly expect when you receive your vaccine.

Stay Invincible!

Em (Invincible Woman On Wheels)

Grief & Loss: The Opposite Side of Father’s Day

A heavily personal post from me today. To mark UK Father’s Day 2020, I thought I’d discuss my dad, my grief and how losing him has changed how I see Father’s day now.

Firstly, a content warning, I’ll be discussing grief, bereavement and bits and pieces of medical stuff here, so I’d suggest skipping this post if any of those are likely to significantly upset you or bring up any of your own experiences.

I guess if I was to explain this post in a sentence it’s exploring the opposite side of father’s day. As I said in the mini introduction, the publication of this post coincides with UK father’s day 2020 and is also a couple of days short of the 2-year anniversary of my own dad’s passing. Since he passed away, I’ve begun to see Father’s day in a different light. Of course, there are those who have been father figures to me that I can still celebrate. Men like my own stepdad, who has been there for me for years whilst my dad was still here and has continued to be there for me since my dad passed away. But father’s day is still different. All the emails from brands and venues about father’s day gifts and reminders, and every blogger “father’s day gift guide” that I see is a stinging reminder every single time that my dad is no longer with us. Now, I’m not saying don’t write that content or for brands not to send those emails, I just don’t think we see this side of the situation as often (how people approach certain days and occasions after a bereavement). So, I thought I’d explain my side of it and how fathers’ days is different now.

I didn’t see my dad often, we lived at pretty much opposite ends of the country for a good portion of my life, so I never made a very big deal of father’s day. I’d just send him a “happy father’s day”  message, and a present if I could find a particularly good one that I thought he’d enjoy. Oh, how I  regret that now he’s no longer here, I so wish I’d made a bigger deal of Father’s day when he was here.

Father’s day was different once I’d received a phone call that turned my world upside down, telling me that my dad was ill and that we’d have to rush up to the hospital (hundreds of miles away). I didn’t fully know what was going on, but I knew I had to organise and sort everything to be ready to drive up to the hospital in the morning. It’s pretty difficult to organise your life when it feels like the world’s spun on its axis and the ground’s dropped out from beneath you all at once.

Father’s day becomes different because all I can remember is my dad’s last father’s day  with  him in the ICU (Intensive Care Unit).  All of us (I have siblings) bringing cards and wishing him a happy father’s day. I can’t tell you how heart-breaking that was being unable to know what he thought of his cards or if he could actually hear us.

Father’s day is different when I realise that I spent the whole lead up to that day 2 years ago (basically the whole of June) discovering that the man I thought was invincible and immortal (because everyone thinks their parents are immortal right) actually wasn’t.

Father’s day becomes different when I remember the days and nights I spent trying to sleep in an ICU waiting room or relatives room wondering if dad was ok whilst the rest of us slept. Terrified to go to sleep in case he wasn’t with us when I woke up. Begging for someone to sit with him whilst I slept so that he wasn’t alone if something did happen.

Father’s day is different when I remember that,  instead of spending those June days chatting to dad and planning our trip to Madrid, I was cancelling the trip and wondering if I’d be helping to plan a funeral instead.

Father’s day will be different when I go to text him that same “ happy father’s day” message and realise I can’t because he won’t respond anymore.

Father’s day will always be different when every sentence talking about that wonderful man has to start with “dad was …” and not “dad is …”.

I’m not sure where I was going with this blog post. But what I’m saying is: Beyond the brands “father’s day” emails and adverts and the bloggers “ father’s day gift guides”, there’s a different side,  a different feeling to father’s day for me and those like me who no longer have the man we call dad with us. And I think that should be talked about more.

Happy father’s day, dad. I love you and I’ll miss you forever

All my love

Ems