Health

Having multiple sclerosis at Australian Christmas

06/03/2020 By Savanna Robinson Leave a Comment

It sucks. Trying to deal with multiple sclerosis in summer heat is bad enough. And lately for Australian summers those have been pretty darn hot. Trying to deal with multiple sclerosis at Australian Christmas when relatives are reveling in the heat is 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. Movement slows down and you worry about accidentally knocking things over…like your Christmas drink. Your body starts to ache and you know it’s likely to have you seeking out pain killers to be able to sleep the night.

If you stay inside you choose to be socially isolated, as you miss out on interacting with relatives you rarely see all year. Christmas 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. 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 depressed feelings. 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?

To help combat these feelings and symptoms from having multiple sclerosis at Australian Christmas here are a few suggestions I have to make your day better.

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.
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.
Invest in quality cooling garments such as cooling vests, scarves and headbands. Wear for any outdoor activity.
Be kind to your self. Realise that you have to look after yourself and if you can’t deal with some Christmas activities, then so be it. Your well-being comes first!

So although having multiple sclerosis at Australian Christmas can be difficult, it’s not all bad! Learn the best way for you to look after yourself and still enjoy the Christmas season.

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.

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.

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.

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?

Living with depression in marriage- Depression and relationships can it work?

12/06/2018 By Savanna Robinson 2 Comments

Being in a relationship with a partner who has depression is tough. Depression and relationships can work, but it takes a lot of work from both people. And depression in marriage can be slightly tougher if you hold the view of being there for your other half through sickness and health seriously. This is my own view on how depression can affect relationships and what it’s like actually being married to someone with depression.

Depression can be a huge thing to admit to with your partner. It’s your brain constantly having dark thoughts, and nothing from your usual life being able to lift you back up out of that darkness. The chemical imbalance of the brain just will not allow any good thoughts in at that time. It can change you from a loving caring partner, to the nastiest piece of work out there. And to a lot of men, that can be so humiliating that they have little control over that.

My husband Steve has chronic depression. He’s had it for over 20 years. And it seems to originate from an incident of being assaulted and being critically injured at that time. Since then he’s been on various medications to help with depression, anxiety and impulse control. He sees various medical professionals that help him in dealing with this condition- psychologist, psychiatrist, and his regular doctor. But quite often he can be forgetful and not attend booked appointments which can lead to a long wait for a new appointment date.

It is chronic depression as it is ongoing and unlikely to be cured by any means. It’s trying to manage the worst of the symptoms and let him live as normal a life as possible. Because some days just getting out of bed itself can be a challenge for someone with depression.

If your partner is on medication, it is so crucial to your relationship that they take it as prescribed by the doctor and take it regularly. This can be hindered by other behaviours at times too, such as not coming home regularly at night (or at all). But if it’s not taken as prescribed, it can’t do its job. This is a big issue with my husband- he’s started medication for impulse control, but it needed a higher dose as wasn’t working well enough. But then he doesn’t come home on time to be taking it and getting enough weeks of it into his system to stop the impulsive behaviours.

It’s important to work together on triggers that make the depression worse. Your partner might not notice the behaviours that lead up to bad episodes, but you certainly will after a few times. Note these down for them to talk about with you or a psychologist, so strategies can be formulated to work on those in the future. Some triggers that might be causing issues are special occasions (birthdays, Christmas, etc), toxic relationships with others, big life events.

You could witness a whole range of behaviours come out due to depression. Ones that are common here are avoidance of talking to me, panic attacks, obsession over things like football and hobbies, gambling, suicidal or bad thoughts and running away to a place to think (or overthink as they tend to do).

Know that times in any relationship can get tough. And with depression, this is probably an absolute guarantee. The statistics of couples staying together with unmanaged depression in the mix can be frightening. When your partner isn’t pulling their weight in your marriage or relationship for an extended period, and exhibiting all sorts of behaviours that are not socially acceptable, you may want to throw in the towel. And many, many people do. Hence why opening up to others about their depression can be so difficult to sufferers. They are afraid of getting close, hurting someone else, and then feeling worse in themselves. And then the cycle repeats itself.

If you do need to step away from the situation (for a few minutes or a permanent break), don’t be afraid of the excuses either. To help support your partner, you need to be looking after yourself too. Don’t let their problems eat away at you and become your problems too. Take time out to relax from managing issues with them. Take care of your own health and the rest of your family. And if it all becomes too much, let them know about it and go talk to someone who can help you decide if it’s in your best interests to stay or go.

But know that if you do stick around with your partner, they are grateful that you can look beyond the illness, the behaviours and love the person they can be. They love that you are a strong person they can depend upon to support them through the difficult times. And maybe you’ll be able to help out others thinking of whether living with depression in marriage is for them.

If you or your partner are showing signs of depression and need some help, here are a few resources available in Australia. Lifeline Australia is a national charity providing all Australians experiencing a personal crisis with access to 24 hour crisis support and suicide prevention services. And Beyond Blue provides information and support to help everyone in Australia achieve their best possible mental health, whatever their age and wherever they live.

Come and see more of my posts about marriage here.

7 different ways to spoil your Valentine without flowers

Health

Tips to keep your healthy nails.

What is an MRI scan?

Having your MRI scan

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