Health

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

Having multiple sclerosis at Australian Christmas

06/03/2020 By Savanna Robinson Leave a Comment

It sucks. Trying to deal with multiple sclerosis in the summer heat is bad enough. And lately for Australian summers those have been pretty darn hot (many times the past few summers we’ve had far too many days of over 40 degrees Celsius, and often in a heatwave for 3 days duration). Trying to deal with having multiple sclerosis at Australian Christmas when relatives are reveling in the heat is utterly awful. It never turns out to the lovely holiday celebration that you hope for.

If you go outside in the heat your day doesn’t go well. Brain function slows right down, so you can’t keep track of conversations properly. I find that if I’m in any situation since diagnosis with a lot of people talking, that I have to focus so hard on listening to the conversation, which in turn makes my fatigue (another typical MS symptom) more pronounced. Movement slows down and you worry about accidentally knocking things over…like your precious Christmas drink. Your body starts to ache deep in the muscles and you know it is very likely to have you seeking out pain killers to be able to sleep though the night.

via GIPHY
How you feel with fatigue when having multiple sclerosis at Australian Christmas

If you stay inside you choose to be socially isolated, as you miss out on interacting with relatives you rarely see all year. Christmas for me is the time to catch up with all those relatives. I really look forward to catching up with my aunts and cousins that I barely see through the year and find out what is new in their lives. Or just chill out in their company. But not many people want to stay inside unless it’s extremely hot. (Just a regular hot day with multiple sclerosis at Australian Christmas can make life tough).

Missing out on those social interactions can bring on feelings of depression. Why me? Why do I have this stupid disease that stops me enjoying Australian summer like the rest of my family? Why should I go out to an event, if I can’t be around where all the people are? This negative self-talk also aggravates your fatigue.

To help combat these feelings and symptoms from having multiple sclerosis at Australian Christmas here are a few suggestions I have used to try to make your day better and a more enjoyable experience for you as an MSer (person with multiple sclerosis).

Arrange for Christmas to be at your (hopefully air-conditioned) house. It’s easier to arrange where tables and chairs will be for visitors and you can situate them in the coolest part of the house. Fans also help move the air around which can help make you feel cooler too.
If you have to go elsewhere, keep an eye on the weather forecast and plan your day to conserve energy/spoons for social interactions. Rest when you can. Ask to lie down in a quiet room for a few minutes to recharge through the day.
Sip iced water regularly. Current research shows that doing that can help reduce the effect of heat on your body pretty efficiently. Using a water bottle that keeps it chilled saves you filling up so frequently too if out and about.
Invest in quality cooling garments such as cooling vests, scarves and headbands. Wear for any outdoor activity but also cool when indoors.
Be kind to your self. Realise that you have to look after yourself before others and if you can’t deal with some Christmas activities, then so be it. Your well-being comes first! Having multiple sclerosis at Australian Christmas

So although having multiple sclerosis at Australian Christmas can be difficult, it’s not all bad! Know your limits of what your body can deal with in the summer heat. Learn the best way for you to look after yourself in the heat with some of these tips and still enjoy the Christmas season. HaHaving multiple sclerosis at Australian Christmasving

Let me know in the comments below how you go dealing with your Multiple Sclerosis during the heat of summer.m Having multiple sclerosis at Australian Christmasultiple sclerosis at Australian Christmas

Starting on Gilenya

9 Healthy Nails Tips

24/01/2019 By Savanna Robinson Leave a Comment

There are many myths that float about the Internet about what are signs of healthy nails or the opposite. So it can be a minefield when you are trying to look after yourself as part of your self-care routine. These are simply my healthy nail tips I try to follow and recommended by reputable medical sources.

Our nails are a pretty important part of our fingers and toes. They help protect the skin underneath on our fingers and toes when they are being used as tools. And they do take a beating at times, because they are there to protect us. So often white marks or spots come up that are simply from damage happening to the nail or nail bed in our everyday lives. How often do you bang your hands on something, and then ten minutes later have completely forgotten that you did it until you notice a mark turns up. Most marks from damage like that will grow out (eventually…the time taken depends on how quickly your nails and hair grown and the time of year too).

Normal healthy nails should be pink where the nail is on the skin, and white on the part that grows off the nail bed. They can sometimes develop harmless vertical ridges down them (going from cuticle to nail tip that is), which can be more prominent the older you get.

(If you want to know what is NOT normal for nails, take a look at this article by the Mayo Clinic).

Tips to keep your healthy nails.

Eat healthy foods.
Drink plenty of water- 2 great things for your whole body.
Moisturise your hands and nails daily with a non greasy moisturiser.
Use Cuticle oil daily (applied to skin above nail, not to cuticles directly).
Keep your nails trimmed and filed to prevent any devastating tears. And if one occurs, get to it quickly to save further damage.
Keep your nails dry and clean – which means wearing rubber gloves if doing the washing up!
Apply a nail hardener if you think your nails need more strength.
Don’t bite or pick at your nails or hangnails. Always use clippers or sharp nail scissors. (Yes Steve this includes you!).
Use gentle products on your nails. Try to use acetone free removers etc so they don’t dry your nails out as much.

To download these tips to keep as a reminder click here.

But if you are ever unsure about something to do with your nails, go speak to your doctor who can tell you if it’s something sinister…don’t just rely on those images of 10 signs of unhealthy nails you just googled! Some of them may be right, but some may be completely wrong and tell you that something is happening that isn’t really. Your doctor is the best person to ask in the end. Not Dr Google!

References:

https://www.mayoclinic.org/healthy-lifestyle/adult-health/in-depth/nails/art-20044954

https://www.disabled-world.com/health/dermatology/nails/nail-color.php

Want to take your self care that extra step? Then read about adding wraps and tips on how to apply them.

Starting on Gilenya

07/01/2019 By Savanna Robinson Leave a Comment

So you’ve had it recommended to you by your neurologist to start treatment for your relapsing remitting multiple sclerosis. You may have been given a few options to look through, with wads of literature with the pros and cons for each medication. But in the end you have chosen to go with Gilenya (Fingolimod). And now you don’t really know what to expect, or prefer to hear personal experiences rather than the booklet from the drug company. This is my journey of what to expect when starting on Gilenya for helping with Relapsing Remitting Multiple Sclerosis. (But remember I am not a medical practioner…this is just my personal experience).

When I saw my MS nurse with my choice about which medication I had chosen to start after my relapse a few months prior, I was given a plastic sleeve with notes to take to my GP about what I was about to start and considerations that would be needed about treating my health in the future. I also had some tests to do before a script would be drawn up. And the final thing. I had to finish breastfeeding my toddler before I could start.

That was probably the most difficult part. Seeing my nurse in April, and finally weaning my toddler in late December. Then it had been so long I had to get the tests redone to be valid.

Before starting Gilenya I had to have blood tests to screen for a number of things, including immunity to Chicken Pox. One of the tests wanted wasn’t available at all pathology centres, so it pays to check that out beforehand.

Then there is the ECG required to get a baseline reading. I finally had my first one where I didn’t have to completely remove my bra and top, which makes me wonder why so many places still insist on that. Most undignified for us ladies. starting on gilenya

And lastly an OCT on your eyes as a baseline to check swelling of the optic nerve doesn’t happen.

My GP also sent me to a dermatologist to get a baseline check for skin cancers after reading the literature provided to her and the incidence of skin cancers in the trial.

With all those complete, an authority script to purchase the medication was written up for me. Allow a few days for the chemist to get it in stock as not all keep some in stock unless they have a few patients on it.

I was booked in for an appointment to be monitored for 6 hours with my first dose. (A requirement by the Australian government for it to be on the PBS).

I had been told to expect an ECG before starting, and hourly through the time, as the 5 hour mark was where the heart rate could drop a bit with the first dose.

What I got was briefly seen by doctor who explained how the day went. Told to take my first dose, and the time for 6 hours was started. Then an ECG at the end and the go ahead from the doctor if I could go home. The bit in between was a long boring wait in the waiting room…armed with books and iPhone.

The nurse had forewarned me to be diligent in taking my tablet every day at the same time for at least the first month. If you miss a dose in that beginning part, you have to do the 6 hour observations again. When on for longer than that, missing up to 2 weeks is okay if you get caught out on a holiday.

May your journey starting Gilenya go smoothly! I’m hoping this is a positive thing in my MS journey and that it works well with minimal side effects. So far it’s been good for me for 10 months.

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

Why we should look after our hands.

11/11/2018 By Savanna Robinson Leave a Comment

You may start your day with a rigid beauty regime…cleanse, scrub, moisturise, foundation, colour, lipstick. (There may be even more steps in there, but that’s a kind of basics for some people). But unless you spend the rest of the day in front of a mirror or taking endless selfies, then you really won’t look at that end result many more times again for the day. Your hands meanwhile….you will probably see them countless times! Making your morning cuppa, on the steering wheel on the drive to school, when sitting in yet another meeting, eating your lunch. Your hands are always there within your sight. So why don’t we look after them just as well as we do our faces? Read on for some hand care tips and why we need to look after our hands.

Our hands, like our faces, also need some tender loving care or they will show our age just as much as our face can do when left unpampered. Some of the things they will need are a good exfoliant to remove those dead skin cells, a moisturiser for replacing the moisture that water takes out of the skin and oil to help keep those cuticles and nails hydrated! (Read more about the importance of moisturising here).

And when you’ve finished looking after all that for your hands, why not show off your own personality with some colour on those nails. Pop on some lacquer or wraps for a quick touch, or go for a gel enamel if you have a bit more time up your sleeve. Subtle pinks for those who just like a touch of colour, all the way to outrageous designs and prints for the bold at heart! There is usually always something you will be able to find that expresses who you are.

why we should look after our hands- older lady's hands

So why not treat yourself today! Look after those hands, as they do so much for you…don’t they deserve to be the centre of attention every now and then! I know mine do!

If you’d like to learn more about looking after your hands, why not come follow my Pinterest board on skincare.

Having an MRI scan

09/07/2018 By Savanna Robinson Leave a Comment

If you have Multiple Sclerosis, you are quite likely to need an MRI scan at some point. But what is it, what does it do and most importantly what is it like to have an MRI scan? Read on to learn about this medical imaging technique.

What is an MRI scan?

MRI stands for Magnetic Resonance Imaging. It’s a medical imaging technique that uses strong magnets and avoids exposing the patient to radiation (which we know is bad in large amounts). It is used in medical diagnosis of many conditions such as MS as it can provide images of the body’s organs.

Neurologists like to use an MRI scan to see if there are lesions in the brain and spinal cord of MS patients. And they track if these increase in number whilst patients take their disease modifying treatments. They are also used in other medical conditions where the other imaging techniques are not giving a clear diagnosis.

Having an MRI scan Magnetic Resonance Imaging Brain MRI

Aside from the dreaded lumbar puncture, the MRI may be the most feared thing in the diagnosis and treatment of multiple sclerosis. Particularly for those who suffer from claustrophobia. This is because the MRI machine is basically a small tube you lay down in, in a room all by yourself, and have a lot of very loud sounds thrown at you. For those who cannot stand the confined space, most places can offer an MRI with sedation. This is an option I’ve known a few MSers to use, so don’t be afraid to ask for this option if you need it.

Having your MRI scan

When you get to your MRI scan, you will have to fill out a questionnaire (if it hasn’t already been sent in), asking questions about potential metal in your body. You’ll then be asked to put on a hospital gown. And you will be called upon when it’s time for your scan. Which is never EVER on time. If a patient moves during their scan, that sequence needs to be redone, so they do love patients that can keep still for their time and keep them more to time for others.

You’ll lie down on the sliding table that goes into the tunnel and will be handed an alert button for if you are having troubles during the scan and need to get out. Different pieces of equipment may be slotted in around you, to help keep you still, and keep you comfortable during the time (my last scan was about an hour and a half long for brain and spine). You may be given head phones, and the option to listen to music…but in all honesty I’ve never been able to hear any of the music during the scan…just the breaks in between. At some point you may also need a contrast injection, depending on what your specialist has ordered. I know neurologist seem to like this to see if there are new active lesions.

Be prepared for lots of loud banging sounds, like a jack hammer digging up cement right outside your bedroom window. Sequences can range from around 1 minute to about 8 minutes in all the scans I’ve had. The best places will even let you know how long the next one will be, so you get a bit of a breathing (or twitching) space in between. I find that I also get a lot of numbness in my arm holding the emergency alert button. Fortunately I’ve never had to test if my hand will work in that numb state.

And then it will be over. The silence after the scan can seem eerie after such a long period of loud noise. And it’s a relief to feel the table slide back out of the tube and there be someone there to help get you up. It seems that these days most MRI scan results and reports are sent straight to the doctor, so you don’t even have to wait around for the scan to be printed up. Be sure to follow up with your specialist for results of your scan. And that’s pretty much it. Until your next MRI is needed.

What is MS? And what exactly does it feel like?