chronic illness

How living with a chronic condition prepared me for a pandemic.

11/11/2020 By Savanna Robinson Leave a Comment

2020 has been quite a year worldwide. Coping with the pandemic of Covid 19 has brought many stresses to people’s lives and ways of living that were unheard of for many before. So I thought I’d share how living with a chronic condition prepared me for a pandemic of this magnitude. Not that it has been easy for those of us who are chronically ill…we’ve had out own issues along the way too. Maybe though it will shine a light on how many have had to live for many years prior to this virus wreaking havoc with society this year.

As my current readers know already, I have lived with the chronic condition of Multiple Sclerosis for nearly 16 years now. So restrictions on my way of living with Covid 19 have not been as much a shock to the system as to those who live normal health problem free lives.

How living with a chronic condition prepared me

When one of your symptoms is disabling fatigue that prevents you from even getting out of bed for the day, having to self-isolate after a Covid screening is a breeze. And as we’re encouraged to test for even just one symptom here in New South Wales, having some time to rest and recover at home is so much better than being completely immobile for a day or more.

Putting your health first is another easy thing when you have lived with chronic illness for so long. Nothing is more important than your own health. You need to be okay before you can help anyone else out -whether friend, relative or your own child. So choosing to wear a mask out in public is not a big deal. Plus it protects you from others and helps protect others around you. We are used to not going out in public or visiting friends when unwell. how living with a chronic condition prepared me

Being strict with your winter hygiene is another thing you tend to do when you have a chronic condition. Personally I’m on medication that suppresses my immune system, due to the nature of how Multiple sclerosis attacks the body. Catching a cold or flu might not be a big deal to you, but for me it can take weeks to fully recover. But being in employment as a teacher with children around me every work day has been hard in previous years, as sick children do come to school and cough and sneeze over anyone nearby. Usually me. And that’s how I become sick most years. Having people more aware of their own hygiene practices this year, and being required to wash hands frequently, use sanitiser and wipe down surfaces more regularly has been great. I’ve even improved on the good practices I already had in place. Yes, I’ve still had symptoms that have required me to be Covid tested 5 times so far this year (all negative fortunately). But I’ve been able to rest and recover and haven’t been affected my nearly as many viruses as I would in a regular year. how living with a chronic condition prepared me

Living with a chronic condition you usually have to put up with some social isolation as par for the course. Whether due to fatigue, pain or medical appointments that can’t be re-scheduled we can miss a lot of events with our friends and family. Thankfully social media and video calls have helped a lot with this recently. And we have learnt to treasure and savour our moments with those loved ones when we can get together or catch up in a conversation. Yes it has been harder this year when we’re not allowed to travel everywhere we would like to see others, but it’s not like we don’t have other options in the digital age. Embrace the changes in technology that allow us some contact still, rather than complain about yet another thing we feel entitled to in this day and age.

So I end with cheers to the chronically ill people who have been leading the way in changed behaviours to deal with a pandemic. And for those fortunately healthy ones, remember these conditions will not last forever…but for some people they always have been a way of life and will continue to be long after any possible vaccine. Think of them before you complain about the next aspect of your life being too hard this year. how living with a chronic condition prepared me

Having a chronic condition during the 2020 pandemic.

03/05/2020 By Savanna Robinson Leave a Comment

To say the start of 2020 has not been great would probably be a huge understatement. In Australia we were still dealing with bushfires in January (The Gospers Mountain Fire was active from October till January). In February we had floods. Then in March the spread of Covid 19 started to impact us. Social distancing began to be suggested more, businesses started to be affected and the great toilet paper saga began. But it has been more worrying for those who have a chronic condition during 2020 pandemic. Having a chronic condition during 2020 pandemic

having a chronic condition during 2020 pandemic

Background to the 2020 pandemic

A little background on Covid 19. Also known as Coronavirus disease, it’s an infectious disease caused by a new virus. It causes flu-like symptoms and is spread mostly by contact with people with the virus. This virus started in China in December 2019, and by my birthday at the end of January was declared by the World Health Organisation as a Public Health Emergency of International Concern. On 11 March 2020 it was declared a pandemic. At that stage the virus had spread to all areas of Italy and was beginning to impact the US. chronic condition during 2020 pandemic

Now for most people Covid 19 just causes mild to moderate respiratory symptoms. Some people infected with the virus have even reported not even feeling unwell, yet testing positive after being in close contact with other confirmed cases. And the information about is still evolving.

But for those of us with chronic conditions, immune suppressed or compromised people and the elderly it is not such great news. As in the most severe cases require hospitalisation and possible ventilator use in the ICU. And the death rate from Covid 19 has varied from country to country, seeming dependent on the strategy governments and health authorities have taken in this pandemic.

My chronic condition situation with MS

At first I wasn’t so worried about having a chronic condition during the 2020 pandemic with my multiple sclerosis. Advice from MS Australia and neurologists was that we shouldn’t be at more risk of catching Covid 19 than anyone else.

But then more information started coming out about specific MS medications and the potential risks. You see not many people with MS have had the disease yet for them to really know how Covid 19 might affect MSers. And a lot of the medications available in Australia aren’t so in China where the majority of cases had occurred at that point in time. So specialists are making educated guesses on how they might affect each group of medications.

My medication, Gilenya, has a mild to moderate risk of complications on current advice. But a real risk of relapse if medication is discontinued. However they ask if we do develop Covid 19 to contact our Neurologist as well as the other requirements of the Health authorities…so they can track the data more specific to the Multiple Sclerosis community world wide.

Not having a clear idea about how this pandemic is going to affect your family is worrying and exhausting. As a teacher I was required to be at my school until Monday 23rd March, until they finally brought through some guidelines allowing at risk people to work from home. Knowing how quickly things spread through schools of normal conditions like gastro and colds/flu, I was getting quite panicky at the risk of catching something that could land me in hospital. And every little symptom my family reports is a cause for thinking “Do I need to be worried about that?”

Things to do

The only things we know for sure on how to help when you have a chronic condition during the 2020 pandemic is the strategies being advised to all people. Wash your hands well for 20 seconds (as we know sanitizer has been super rare since at least January) and maintain social distancing. In New South Wales we’re being recommended to keep 1.5 metres away from all people (tricky with preschoolers) and simply to not go out unless absolutely necessary and essential. Plus for the last 4 or 5 weeks we have been staying at home, seeing very few people…which is hard on all.

Facemasks at first were not recommended as effective in avoiding Covid 19. As the types that are able to keep the virus out are needed by medical personnel for if we do come down with it. But since I started writing this blog post the advice has varied as to whether you should be using them or not and the protection they offer. I do know that some medical practices in Australia have required patients attending to wear a mask whether displaying symptoms or not. I started sewing up a couple for us and a friend who needed a mask to see her doctors.

It has been a trying and scary time for all and I think the whole world is completely over the need for distancing from all other people! It’s just not natural for a social creature, which we humans are. But it’s even more trying and scary for those more at risk of complications than the average person.

Living with a chronic condition can be hard enough at times without thinking about your own mortality and what the risk of going to the shops could hold. But as to following the advice for staying healthy, I think that my fellow chronic condition people are on top of being able to follow through on that, as it’s part of our regular lives anyway.

Stay safe everyone and let me know in the comments below how you have been feeling during this pandemic with a chronic condition. chronic condition during 2020 pandemic

Living with MS – A day in the life of an MSer

What is a Spoonie?

24/07/2017 By Savanna Robinson Leave a Comment

As a person with Multiple Sclerosis I have often found myself in situations where it is difficult explaining just how I feel and what it can be like to have this illness. There have been many analogies used to describe this and other chronic illnesses, in particular the fatigue part. Some days I feel it is like trying to move my limbs through deep wet cement. But my absolute favourite would have to be defining myself as a Spoonie, based on the Spoon Theory.

Where does the term Spoonie come from?

‘The Spoon Theory’ written by Christine Miserandino began as Christine’s way to explain her disease of Lupus to a friend. It uses spoons to describe the energy needed to do certain tasks during everyday life. Each activity uses a certain number of spoons. But unlike healthy ordinary people, a chronically ill person has a limited number of spoons available to them depending on their disease progression, fatigue levels, the weather and overall general health at the time.

People with a chronic illness (such as MS, Lupus, and Fibromyalgia just to name a few) have to carefully plan out their day’s activities based on the number of spoons they have for that day. Once those spoons are used up, they are either borrowing from the next day’s supply (which can lead to a even worse day) or simply cannot do any more for the rest of that day. And so started the trend of people with chronic illnesses explaining how tough life can be for them using this analogy. Which has also resulted in many of them classifying themselves as Spoonies as Social Media took off. I’ve seen posts by many who get tattoos or collect spoon paraphernalia to help make others aware of their health.

Using the Spoon theory to explain how I am feeling on any day is a lot easier than any other way I’ve tried in my 12 years with MS. It allows my friends to know that even though I may keenly want to meet up with them, but that my body used up all the day’s energy on simply having a shower and washing my hair. They know on a low spoon today to not expect too much from me, as even mental processing is slower on those days. And it’s at those times that my dear friends keep a close eye on me to see I’m not pushing myself through it all and over doing it, as they know I’ll feel even worse come the next day!

So I’m proud to call myself a Spoonie! My disease doesn’t define me, but being a Spoonie allows me to share with others a little bit of what my life can be like.

Come follow my Pinterest board about Spoonies.

Leave a comment about your Spoonie experiences.

https://brighteyes77au.com/living-ms-day-life-mser/

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