Covid 19: Lockdown And Chronic Illness

I wanted to write about the impact of the Covid 19 lockdown on me personally, because it would seem from friends points of view or from reading various social media comments that people might think it hasn’t made much of a difference to those that would normally be housebound alot anyway. At least from my point of view, it does make things more challenging and has impacted me in many ways both practically and mentally.

I’ll start with the most obvious change the lockdown has brought…..

Freedom of movement is severely restricted.

You might think, well what difference does that make when you can’t go out most of the time anyway? Well, for me, it makes a huge difference. Getting outside perhaps for a drive to the beach and a short walk along the sand, or maybe a trip out to a coffee shop to catch up with a friend makes a HUGE difference to my mental health. I can only do these things on the days I’m feeling well enough to do them. Summer time I find a bit easier because I don’t have to negotiate cold slippery pavements or strong winds. Even just the cold temperatures makes my body pain worse. So when the nice weather is here I realIy want to make the most of those days. After a long winter stuck indoors and not seeing many people other than immediate family, it is something I really look forward to. My window of opportunity is gone once the cold weather returns. Its also not possible on the days I’m too weak or in pain to leave the house. So when I am feeling able to manage, it’s really important that I’m able to get out and about.

Another big change for me has been the lessening of help from other people.

When lockdown began there was alot of focus on help within the community for general tasks that would usually involve going outdoors e.g grocery shopping. Alot of the help I need though is inside my home as most outdoor tasks I can do myself online. Under lockdown rules you are allowed someone in your home if they are offering care or assistance to the vulnerable. Normally I would have help with cleaning as I struggle with that alot. Particularly my bathroom as it involves alot of bending down and scrubbing. With a painful back and weak wrists it’s something that I really do struggle with and it increases my pain significantly. If I attempt it myself it has to be spread over a few days and not tackled all at once. Since lockdown I’ve only had one parent entering my home to assist me as I try to keep contact to a minimum. So it’s alot to expect of one person to manage everything I need help with. When I feel like I’m asking too much it can make me feel like a burden which then has a negative impact on my mental health.

Simple tasks like a parcel delivery have also become more challenging as previously I would feel comfortable asking my regular postman or courier to lift heavy parcels into the house for me. This isn’t something I’ve felt comfortable doing during this health pandemic. Delivery workers have been given new guidelines to follow meaning deliveries are now contactless and they shouldn’t be entering peoples homes. This makes it very difficult for people who have mobility issues and live alone.

Online grocery shopping has been incredibly difficult.

There’s been lots of media attention surrounding supermarkets prioritising the vulnerable for online deliveries but sadly many truly vulnerable people like myself have fallen through the gaps. Government announced strict guidelines that needed to be met in order to qualify for help from supermarkets. You had to have a particular diagnosis, be taking particular medications or undergoing treatment currently. There are LOTS of people like myself who have struggled to be diagnosed and are stuck on very long waiting lists in order to get a diagnosis or treatment. Many conditions that are severly debilitating were not recognised by the government. I had Guillain-Barre Syndrome in 2016 which would meet the government criteria of a rare neurological condition. It’s now 2020 and I no longer have Guillain-Barre Syndrome but it has left me with a recognised disability. There is no treatment for the residual weakness and pain, only painkilling medications which I personally choose not to take. So I don’t meet the criteria. I have medically diagnosed muscle weakness in my legs that limits the amount of time I can stand or walk. Supermarket queues would be impossible for me. I don’t have a wheelchair and I wouldn’t be comfortable sitting in one for any great length of time due to my back pain. Add into that the new proceedure of walking one way around the supermarket and having to keep a safe distance from others it makes shoppping impossible for someone who needs to be in and out very quickly. I certainly feel let down by both the supermarkets and the government. My specialist consultant did write a letter for me to give to the supermakets to request priority delivery but Asda refused to even look at it when I called them. I’ve been at the mercy of the shopping slot lottery every since. Having to be awake at midnight fighting for slots certainly doesn’t help with my chronic fatigue or my anxiety.

Going out to the shops is also more challenging.

I have limited time on my feet due to weakened muscles in my legs and general fatigue. Normally, I’d want to be in and out of shops as quickly as possible and I’d avoid long queues. With the current social distancing regulations all stores have now adopted a one way traffic system in store and this makes it incredibly difficult for me as I often have to walk the entire length of the store, up and down aisles I don’t even need to go down. It means extra time on my feet and additional walking. Never have I seen anywhere to sit and rest in any store I’ve been in. A recent trip to the supermarket involved a new queueing system in the very end aisle whilst you waited to pay. The end aisle was the freezer section! I had to stand in a queue immediately beside open freezers, as anyone with chronic pain will know, change in temperatures often lead to an increase in pain. This obviously hadn’t been considered by the supermarket management.

The cost and availability of my regular health supplements also became an issue during lockdown.

Being ill all the time and choosing not to take prescription medications I rely heavily on my regular health supplements to ease pain and fatigue. I have a chronic sore throat which is not only painful but affects my appetite too. Absolutely nothing seems to help except a good quality Manuka Honey and Olive Leaf Extract. The cost of the Olive Leaf increased significantly and I had trouble getting it from my usual place. I assume as it’s an immune support supplement that alot of people were perhaps trying it to lessen their chances of becoming ill, and I know alot of places had problems with maintaining supplies too. When you rely on certain products to ease pain and discomfort then it’s frustrating when they aren’t available or they are suddenly priced out of your budget. It can make day to day living much more difficult.

I’ve also noticed that there’s been a sudden influx of social media posts telling you how to be productive during the days we’re stuck at home.

It puts alot of pressure on people that are already struggling. It’s one of the things I’ve found most difficult to deal with. The fact that most days I just can’t be a productive person because my health has to come first. It’s a huge change from having a 9 to 5 job with responsibilities to then have to adapt to being unproductive most of the time.

During lockdown many people were forced out of work and there were many social media posts with helpful suggestions of how to fill your day and make the most of the time off. Things like learning a new language, learning a new skill, doing some home improvements, home schooling your children etc. I found these posts to be very triggering for my feeling of self worth. I can’t do any of those things and I often feel like I’m wasting the days away because of my poor health. It’s something I’m still working on and I’m trying to change how I view being productive and what that means. For me, anything that improves my mental health or eases my physical symptoms should be what I consider productive. Mainly this would be self care things such as plenty of rest, taking a bath, eating well, meditating etc. I’m still working on accepting that as being an achievement in my day.

There has been one positive thing as a result of the lockdown and for me that’s been a chance for my friends and family to experience what it’s like to have your movements restricted and your choices taken away.

I know it’s selfish to say that, and I wouldn’t have chosen for them to have to experience it at all. Certainly not because of a worldwide health pandemic. None the less, it has been useful for them to gain a valuable insight into housebound living and to experience first hand the mental struggle and daily challenges that it brings. I hope now they can show a greater understanding and will offer more assistance and make a more conscious effort to include me in their lives going forward.

Please feel free to comment with your own experiences of lockdown and any tips you’ve found along the way!

Thankyou for reading.

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