COVID-19

My Suspected Coronavirus Experience

This took longer to write than I thought it would. I wanted to post it on inclusivelivingconcepts, in addition to it being published to give my readers could have a chance to ask me questions. 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. There was no access to testing as it 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 don’t think my disability 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’s 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 assumed 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 ten 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. As time went on, more details came out, and the recovery 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. The symptoms of my brother and dad had 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.

Painkillers 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.

A feeling of being generally off-balance and cold was my experience 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 Ten? When I was ill my ramblings made less sense than usual!

I was also aware that I wasn’t thinking as fast or as clearly as I normally do. 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 on reading or doing 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 the virus took it to a new level. Nothing relieved the nausea in any way until I recovered!

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 the news and NHS were discussing what to expect every day. My mum’s symptoms also echoed mine more closely, 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 to the hospital.

With the 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. 🙂

Self-Isolation Activities

My inclusivelivingconcepts self-isolation activities post. I’ve seen a few of these self-isolation posts pop up since I said I was going to write one. While I’m not surprised by this, COVID-19 is, after all, the only topic of conversation at the moment. During my COVID-19 illness, audiobooks kept me sane as I didn’t have to focus on anything. I sincerely hope that none of my readers share my experience, but being read to is a great way to pass the time, especially if you’re feeling under the weather or just fancy a lazy day. I hope you enjoy reading how I’m spending my isolation and I’d love to hear how you are filling your days during this crisis.

Colouring

I love colouring books, and even before we officially isolated, I used it as a way of gaining some me time. I’m unfortunately not arty and cannot draw to save my life. The beauty of colouring books is that the hard work is done for you.

Pigment app

I’ve recently discovered an app called Pigment, which I now use on my iPad. It’s available for IOS and Android. You can finger tap, use a stylus to fill in an area, or just set it so you can’t colour over the lines. Great if you have limited hand function due to disability. I find as much as I like pencils and paper, after 20 minutes, my hands are really sore.

The app is free with in-app purchases, which I recommend you leave alone. The app gives extra brushes or colours but is £7.99 per week! There are plenty of free pages without having to spend anything, though. Pigment also lets you import pictures to colour in. There are other free colouring apps. Colorfy is a good example (also available on Android) but this is my favourite. Check out a couple of my pictures below.

Organise Email

If you’re already a superbly organised individual, then feel free to scroll down.

If you are looking for a way to be productive whilst in self-isolation, then this is a good place to start. Having completed this task, I can tell you it’s very satisfying.

Top tip:

It feels even less like work if you have music, the radio or your favourite audiobook on in the background.

The organisation process

My process for organising my account followed this pattern:

1) Open your email client or sign in using your web browser and click on your inbox

2) Have a piece of paper/your phone next to you before scrolling right to the bottom of your inbox.

3) Go through and read each message. Before moving to the next message, decide if the email you are currently reading needs to be kept, filed away or left in your inbox. You have to take action before it can be moved.

If it’s an email from Amazon or similar, trying to persuade you to buy something you don’t want/need. Press the delete key! It can feel like a big accomplishment. If you’re like me, these kinds of emails have built up over the years! If, however, it’s something you want to keep, think about a category folder that you could create for that email and write it down on your piece of paper. A few categories I use are Receipts, Social Services and Volunteering. Move onto the next email in your inbox when you have written a category down, and leave the email in your inbox for the moment.

Screenshot Of Email Folders I've Created

4) Go through all your emails. You should now have deleted all useless ads, etc. Your inbox will now contain emails that you need to take action with and emails that need to be filed. You will now also have a few categories jotted down.

Creating Folders

5) If you use an email client, I use Mail on a Mac, visit your email account via your web browser and create folders for all the categories that you noted down. I use Gmail. Folders are called labels in Gmail. To create a new folder, you need to click on an email, find the label icon and type in a new label/folder name. After that, click ‘create new.’ Do this for each of the categories you have written down.

Screenshot, How To Add Labels/Folders In Gmail

NB: Remember to untick the boxes unless you want to move the current email into your new folder.

6) Now, you can go back to your inbox and go through it again. This time, you move each email into one of the categories you created. I had emails going back as far as 2016. It took me about two hours to do all of that. It did get boring, but made life so much easier.

Organising my photos into folders in a similar way. I put all the photos from all my devices and memory cards onto my computer hard drive. I put my favourite music on in the background and went through them one by one.

Video Calling.

Video calls are a great way to stay in touch and can help keep feelings of isolation at bay. I haven’t done a lot of video calls as I find them exhausting at the moment. I really feel for people who haven’t got access to the internet at this present time. I’m mostly using Zoom, as I can have it running on my Mac, and everyone can access it. Unlike Facetime, where an Apple device is needed.

I’ve just started taking part in two regular quizzes via Zoom, which is entertaining. Fingers crossed, I’ll feel well enough this Friday to take part in my Freewheelin’ dance class again. After over a month’s absence, I’m missing it.

Screenshot zoom Dance

Audiobooks

I use two audiobook services, Audible and RBDigital.

Audible is relatively well-known and is owned by Amazon. I love the choice and control, and accessibility of this service. For £7.99 a month, you get one credit on a recurring monthly subscription unless paused or cancelled. Find a book you like and listen to a sample. This is particularly useful if, like me you find some narrators more enjoyable than others. Purchase the book with either a credit or by paying by credit card. Within twelve months, you can exchange a book for another if you don’t like your choice.

When you first join, you have access to a month’s trial, which means you get your first book free. At the moment, I’m listening to Wicked by Gregory Maguire. The book is very different from the theatre production. 😉

Screenshot Of The Audible App On My Phone

Top Tip

When signing up for the free trial, choose the two book a month option. You will get two free books. If you love the service but £14.99 is too expensive, you can always downgrade to the one book a month subscription before the trial ends. If you cancel before the trial is up, won’t be charged and you’ll get to keep your books. Pausing membership is where you take a break for three months. You are still a member. Membership and billing restart after three months but for the paused period you are not charged and no more credits are added to your account. This is Great for when you have too many books to listen to.

RBDigital is the service Birmingham Libraries uses for its members to access audiobooks/magazines and now, apparently, also newspapers. In my experience, it’s a lot more limited than Audible, but it is a free service. A valid library card is required, and set-up is done through your main library webpage. Your city may not use this service, some use Overdrive. Below is a screenshot of the Birmingham Libraries page explaining the setup and the RBDigital app on my phone.

Screenshot of RBDigital app, displaying A Harry Potter Book

Ebooks

Reading is a solitary activity that takes me to different places and is the only way we can travel at the moment. Ever since I’ve owned E-Readers, I’ve loved ebooks. They are so much easier to access as an E-Reader is lighter to hold than a book. I can read whilst I sit outside, which is great when the weather is nice and sunny.

Libby App

I use a Kindle Oasis and an app called Libby. Libby is the ebook app for my library and can be downloaded onto all Android and IOS tablets. Like the RBDigital app listed above, a valid library card is required, but set-up can be done through the app itself. The app will ask you to select your local library and input your library card number. If you have an E-Reader that uses the Epub format rather than the Kindle/Mobi one, loans from Libby can be sent to your e-reader. The only drawback to my Kindle is library books can’t be added to it.

I use Amazon to get most of my books, which is why I prefer the Kindle above other e-readers. Kindle Unlimited is currently offering a free trial to new customers. Project Gutenberg offers free out-of-copyright books to the public. I’ve also just discovered a website called Manybooks.net, which I’ll be exploring for new books soon.

Kindle

Writing

Last but definitely not least is writing. It helps me relax and get any and all ideas out of my head before I go to sleep at night. At least that’s the theory, it doesn’t quite work that well in practice. While I was ill, I couldn’t write at all, which is why this post has taken so long. I still find looking at my laptop screen tiring. I couldn’t wait to start writing again! I’m pleased to be getting back to some semblance of normality in these strange times.

Top tips for coping with isolation

Not being able to see friends and family is hard, and it is very easy to let the situation affect your mental health. Many disabled people already know what isolation feels like, as illness or circumstances have meant that they can’t go out.

Whether you are isolating because you are ill, shielding or just following lockdown rules, here are my top tips for staying sane.

Pick activities that isolation rules don’t change

With the exception of reading, all of the activities I have listed are activities that are done by me when I’m alone. Ok, if I wasn’t isolating, I may colour in the same room as others or listen to music and books with headphones on, but I don’t actually need and wouldn’t normally have anyone else engaging with me. This reduces the sense of weirdness that self-isolation can bring. I’m doing something by myself, and I’m enjoying it. Focusing on this instead of the fact that I can’t visit friends is a positive frame of mind that will assist your mental well-being.

Reading can take you from isolation to anywhere in the world

Whatever form it takes for you, ebooks, physical books, or audiobooks, can transport your mind away from your isolation to different countries’ fantasy lands or just make you think of something else. Using your imagination in this way is one of the best ways I have found to combat loneliness.

Keep in touch with friends and family

It doesn’t matter how you do it, keep in touch. Phone calls, video calls, emails, letters, postcards. Have contact with people. If you’re looking to meet people, various groups are now online to suit all sorts of interests. Dance, writing, knitting, crafting, and photography are just a few ideas.

I hope you’ve enjoyed reading about how I’m spending my isolation. Get in touch and let me know what you’ve been doing to keep busy. If anyone has any podcast recommendations, please let me know. I’m interested to know what all the hype is about but unsure where to start as there is so much choice!

Till next time, stay safe and well.

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