Cerebral Palsy

The Vaccination Process | Booking, Safety and First-hand experience

I’m back with a guide to the vaccination process! Thank you all for being so patient. Please check out the rest of my posts. The content is the same but hopefully, they are now easier to read and more useful information is provided. I have now added alt text and descriptions of images and videos properly. I apologise to my visually impaired readers for not doing this before. Please contact me if any part of this blog is inaccessible to you, whatever your need or disability.

I received my vaccination on 20/02/2021. While a big part of me is sick of talking about COVID-19 I hope it will help tackle any uncertainty or fear surrounding obtaining your vaccination. It is subjective, as was my post on my experience of the virus, so the opinions expressed are entirely my own and should not replace medical advice.

Booking your vaccination

Many people with disabilities have already had the vaccine as many of us are either in the extremely vulnerable category or category six. I’m category six as I have an underlying disability but have no health issues from that. In England the NHS booking service now says you can book if:

  • you are aged 50 or over
  • are at high risk from coronavirus (clinically extremely vulnerable)
  • work as an eligible frontline health or social care worker
  • your condition means you are clinically vulnerable
  • you have a learning disability
  • someone you care for is at high risk from coronavirus

Physical disabilities aren’t mentioned but don’t let this put you off. Clicking the booking service link above will take you to the NHS website, where you will be asked to enter your date of birth and your hospital number. The system then determines whether or not you are eligible. If you are eligible to book your vaccination you will be taken to a page where you can select a place, date and time to receive it. If you don’t know your hospital number, you will be asked to provide your basic information in order to continue.

Vaccine booking screen requesting hospital number

When trying to book my vaccine in this way the system told me I wasn’t eligible. So it’s worth trying as you won’t be booked in unless you meet the criteria. You’ve nothing to lose!Several people I know and people I don’t have got appointments this way before official invitations arrived. I also contacted my GP as I have to recruit carers/PA’s and felt at risk with the prospect of having an increased number of people in the house, without the protection of immunisation. Understanding my situation, my GP agreed I should be moved up the list but I still had a six-week wait. It is always worth asking!

Safely attending your vaccination appointment

Unless you are exempt from wearing one for medical reasons you must wear a mask when attending your appointment. It is understandable that you may feel nervous going out, especially if you’ve been shielding and this is your first outing in some time. Allow your self plenty of time to get to your appointment, the last thing you want to do is rush.

Think about how you will get to your appointment. Although bus services are still running many people, myself included, find them inaccessible. I’m lucky as my GP surgery is only a fifteen-minute walk/wheel from my house. The taxi firm,Uber, is offering a £15 discount on trips to or from major vaccination centres around the UK and their drivers follow COVID-19 safety measures. In some cities, they offer wheelchair accessible vehicles. Carry out a local internet search for transport services in your area which also may be able to help.

Getting vaccinated

On the morning of my vaccine appointment, I got up and dressed in loose clothing. The needle is inserted into the upper arm muscle of whichever arm you choose. Wearing a jumper with sleeves that would roll up high enough saved me from getting undressed at the doctor’s.

My Mom accompanied me as I need someone with me when needles are involved. This is because my startle reflex could cause my arm to move when the vaccine was being administered. Cerebral Palsy startle reflex means that I jump at loud noises or sudden sensations. Someone holding my arm still is just for safety.

Arriving for my vaccination

We planned on walking but as it was raining heavily my Dad took us in the car. I’m very lucky to have them available to assist me. When we got to the practice there was a big queue as someone had been taken ill earlier that day so COVID-19 vaccine patients were backed up. This prolonged the appointment to one hour and 40 minutes! I was hoping to be in/out within half an hour!

Having joined the queue outside Mom helped me put my mask on and we slowly inched towards the front. When we made it inside the tent staff were using to check people’s details I was told that as I’m a wheelchair user I could’ve gone straight inside and stayed warm. I am affected if I get too cold but only in that it can take a long time for me to get warm again. If you have difficulty queuing for whatever reason it’s worth asking if there are any adjustments that can be made for you.

I handed in the form with my details on and we were shown into the surgery and into one of the consulting rooms. The form asked for my name, address, date of birth and questions about how I’d been feeling the last ten days.

Receiving the vaccine

Once inside the consultation room, I was informed that I was going to receive the AstraZeneca variant. I was a bit disappointed. I’d hoped to receive the Pfizer vaccine instead as I’d heard it was more effective and had fewer side effects. There is no proof of this. Some days later a friend told me they had heard the Pfizer was the worst for side effects, guess things affect people differently.

I was asked which arm I wanted the vaccine in and I chose my left as I drive my chair with my right hand. The needle was in/out before I knew it and it didn’t feel any worse than a scratch. The nurse then told me that I may have flu-like symptoms and a sore arm which should last no more than a week. I was then told I could leave straight away and I didn’t have to wait for fifteen minutes. I’m not sure why but I was asked if I drove, (I don’t,) so maybe that is why I didn’t have to wait. We were in the room for approximately six minutes.

Vaccination card

I haven’t been given my second date yet. My GP practice will send me a link to book my appointment sometime in the middle of May.

Side effects

I had my vaccine at 11.10 am and didn’t start feeling ill till about 8 pm that evening. I then experienced a minor version of the joint pain I had when ill with the virus, together with shivering for a couple of days. The worst thing was the injection site became swollen and sore for roughly five days. I was thinking about ringing my doctor when suddenly the swelling went down.

Conclusion

Even though I was uncomfortable these side effects were nothing compared to being ill with COVID-19. Many people experience far fewer symptoms than me. I would encourage anyone and everyone to get vaccinated. The symptoms far outweigh the benefits both to myself and to society. My only caution. Check with your doctor if you have any allergies, are pregnant, breastfeeding or have a compromised immune system. These circumstances may affect when you can be vaccinated and which variant you are given as there are different ingredients in each.

I hope this post is reassuring. If you would like to ask me anything about the above, please do. My next post will be a review of the recent Naidex virtual event.

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My Suspected Coronavirus Experience

This took longer to write than I thought it would. The idea was proposed to me by Disability Horizons magazine, I hope people find it interesting. It was pointed out to me when I submitted this to the magazine that I never actually received a positive diagnosis of Coronavirus I believe that is what it was but because testing was not widely available then, I’ll never know for sure.

Contracting Coronavirus

I live with my parents and brother. Back in April, I believe we all caught Covid-19, but our experiences of being ill were different.

Thankfully, none of us had it seriously enough to need hospital attention, but the road to recovery has been slow, particularly for me.

I’m disabled and have cerebral palsy, but I don’t think this makes me no more vulnerable to the virus than an able-bodied person. I’m probably as fit as any other 34-year-old who doesn’t exercise regularly.

Having watched my brother and mother become ill first, I knew it was only a matter of time before I caught it as my parents are my main caregivers at the moment.

My brother and parents’ symptoms

My brother and dad had what can only be described as ‘typical’ symptoms of Coronavirus – a high temperature and cough. How they felt matched closely with what we were being told in the news, so we assume they had the virus.

At the time, tests weren’t even widely available for NHS staff, so there was little chance of us being able to get tested. I would like to get an anti-body test, once they become available, to be sure that’s what we had. But I’m pretty convinced as it is.

Coronavirus recovery time

The quickest to recover was my brother, who felt ill for about three weeks. Friends with family members who have had confirmed Coronavirus tests have said they experienced a horrible week, perhaps 10 days.

For me, it was two months from catching the virus before I started feeling close to normal again.

Back in April, the information available about how long we might all be ill suggested that we should’ve begun feeling normal towards the end of my second week.

But, as time went on, more details came out and the times seemed to vary. One article I read described someone having what he called prolonged Covid-19. They were ill for three months.

Pain

My first symptom of possible Coronavirus was pain. I assumed it would be sweating because there was so much talk of a high temperature.

It initially made me question whether I actually had the virus. But with my brother and dad having had what seemed so like Coronavirus surely it couldn’t have been anything else? 

I had what I can only assume was nerve pain. I say this because every muscle and joint in my body ached to the point where I couldn’t cope with sitting up as my hip joints were the worst. It was unbearable.

Pain killers didn’t touch it, but there would be random moments where suddenly all pain and discomfort would disappear, only to reappear again sometime later.

Temperature and cough

I didn’t really have a temperature, as has been talked about so much. I woke up sweating a few times in the night, but my temperature was stable.

I instead felt cold most of the time, and generally off-balance, which wasn’t fun. I also didn’t have any breathing difficulties or indeed a cough.

Confusion and rambling

Being confused and disorientated is not something I have experienced before, so this was new territory.

One second I would be convinced I had to do something, but the next I couldn’t remember what it was at all.

I tend to ramble anyway – why use one word when you can use 10?! But, apparently, there were times when I didn’t make much sense at all.

I was also aware that I wasn’t thinking as fast or as clearly as I normally do, right up until a few weeks ago. Thankfully, I now feel like myself again now.

Tiredness

Together with the other symptoms, I didn’t know what was going on half the time and, despite sleeping a lot, I was constantly exhausted.

I have so much sympathy for people who suffer from fatigue after experiencing what I did.

I’d be sitting or lying down, either watching TV or listening to an audiobook when my body and brain would suddenly want to sleep. Even worse, if I didn’t get my head down straight away, I would go dizzy and experience headaches.

The tiredness lasted the longest, about 15 weeks in total. Even when all the other symptoms had disappeared, I couldn’t actually concentrate to read or do anything without needing to go to bed soon after. I couldn’t look at my phone or laptop without getting an instant headache.

Lack of taste and smell

Not being able to taste or smell anything is now a recognised symptom of Coronavirus, but it wasn’t at the time my family was ill, so that threw another curveball.

For me, the virus caused the weirdest sensation. It wasn’t like when you have a cold and you can’t taste anything, or only taste the catarrh in your throat.

Everything tasted like dust. There was no texture to food either. Everything I put in my mouth could have been the same food.

I suppose at least it didn’t taste horrible, but trying to eat with no sensory feedback was hard. The lack of smell was easier to cope with as I’d experienced that before.

It was also weird when these senses suddenly came back. I was actually overwhelmed for the first two or three days afterwards as everything was suddenly different.

Nausea

This was the worst symptom. I suffer from nausea anyway, but it seems as though this virus had taken it to a new level.

As mentioned earlier, I had no breathing difficulties and I didn’t really have a cough. But I do believe that this virus, assuming it was Coronavirus, attacked my digestive system.

I felt like somebody had turned me inside out. If I didn’t eat, I felt ill, and if I eat more than a few mouthfuls, I was sick. It was a delicate balance that I’d mostly figured out by the beginning of week two.

The rest of my family stopped eating altogether for around two days and then felt better. My nausea lasted about six weeks.

I’ll probably never know if my theory is correct, but it was disconcerting to have an atypical experience when every day the news and NHS were discussing what to expect. My mum’s symptoms also echoed mine more closely too, so it wasn’t just me.

I hope reading this has been interesting and useful in some way. I’m so grateful that none of my family had to go into hospital.

With lockdown relaxing, I just hope people will be sensible so that everyone can get back to ‘normal’ and leave their homes without worrying about catching this awful virus.

I’ve been very lucky, but I never want to feel like that again. Stay safe everyone.

My next post will be about the importance of choice and control and how I’m still having to fight to achieve this! So much in fact that I’ve started a new Twitter hashtag, #DirectPaymentHeadache. If you or someone you know is having issues with the support you receive, DP or not, please get in touch. Together we can effect change for a more inclusive world. 🙂

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Disability

In this category. I will write about my experiences, sharing what living with the disability known as Cerebral Palsy is like for me.

What is Cerebral Palsy?

Cerebral Palsy is a neurological condition where parts of the brain don’t develop properly. It can be caused by infection or abnormal brain development. In my case, I was born three months early so the part of my brain that controls movement never developed properly. The reason for my premature birth was never discovered.

How does your disability affect you?

My disability affects my arms and legs which means I have poor dexterity and I cannot stand or walk unaided. My need for equipment to assist me in life is a must as is my need for care support. I have to access services to get this assistance. As a result, my opinions have become well-formed over the years!

I rely on my wheelchair to move around and grab bars to transfer. In order to be able to transfer all of my equipment needs to be at the correct height and in the right place. Because of this, I have a wet room with grab bars surrounding the toilet, a shower chair, a slide sheet to assist me to transfer in and out of my shower chair, a custom made manual wheelchair and a profiling bed.

Without the above products, which I will review, I would be reliant on a hoist, many people with a disability do! While there is nothing wrong with this, hoists are large and therefore take up space. It is also healthier for me to use my muscles and to move my body as much as possible. The reviews category and the disability category will cross over. Therefore posts written under reviews will cover a specific place, event or piece of equipment. This disability section is where I will write about everything else and hope to have discussions with my readers along the way.

  • Me with an umbrella attachment
  • My Dog, Ben, Sunbathing in the garden
    My dog sunbathing in the garden

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