Spoonie life

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

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?

Pain in Multiple Sclerosis – is there MS pain or am I imagining it?

14/08/2017 By Savanna Robinson 2 Comments

What the doctors say

Is there MS pain? There are a lot of doctors out there who will constantly tell their patients that there is no pain with Multiple Sclerosis. And that might be true with how ‘real’ pain is caused with injury or infection. But there is still an aspect of pain they usually aren’t considering, but that affects many of the people I’ve met online with this disease. Multiple sclerosis pain.

As this disease is caused with interruptions in the central nervous system from lesions, there are all sorts of funky things that end up happening to our bodies that shouldn’t. Messages don’t get from the brain to certain body parts telling them to walk, to pick up things, to relax or contract those muscles sets, etc.

The body of someone with MS also has a lot of misfiring messages that get read by the body as pain because it doesn’t know what else to do with the signal that has been sent back to the brain. There is no injury or cause for it, but because of those scrambled signals it thinks “oh boy, something is wrong, we must be hurting’. And so you do! And it hurts just as much as any other injury you may have. Multiple sclerosis pain. MS pain

My latest experience

The last two days has had some of that thrown in for my enjoyment. It’s been unseasonable warm for the last month of winter, and my body’s internal thermostat is already broken with this MS. It is said a change of half a degree can set off the heat fatigue symptoms and that can be true with me. The change over from winter back to spring can be agony for my body, not knowing what to do with these changes. Multiple sclerosis pain. MS pain

Yesterday I had no energy and spent a lot of time on the lounge while our toddler played. Today was worse. I woke up with pain in my forearms, hands, and lower legs. It was a real struggle to get breakfast done for the little one, as it hurts to do fine motor activities like manipulate spoons. But she’d be pretty hungry if I didn’t grit my teeth and do it. Multiple sclerosis pain. MS pain

Then my husband was back home from his early morning haircut, and I could collapse in bed. Not being particularly tired, but it’s just the best place to curl up when in a lot of pain. And ironic as it sounds, even though the pain can be started off by heat, I need heat to start feeling better again. My hands and feet felt icy cold. Multiple sclerosis pain. MS pain

How MS pain feels

Now the pain. It’s like a deep ache inside my hands and makes them feel weak. But it’s more throbbing on the top of my hands and then extends back up the forearms to the elbows. Massaging the places I ache gives a temporary relief, but it’s hard to do that to both your arms at once. But it is a common action I will do in hot weather, rubbing my arms and legs to try and distract from the pain. Multiple sclerosis pain. MS pain

I was thinking this afternoon while lying in bed, what would it be on the pain scale they ask when at the doctors. I’m always wary of those scales, as people who live with chronic pain conditions have a different idea of 1-10 then someone who doesn’t. We get used to a certain amount of pain as ‘normal’. I even have a friend who has CRPS, the most painful condition ever, that completely screws up the neural pathways and has the body shut down with seizures because of being in so much pain. Multiple sclerosis pain. MS pain

Back to my story

Anyway back to my comparison. I’ve had two babies where I needed an epidural for the pain level (even though I’m one of those people who tells the massage therapist to do hard pressure). The pain I was experiencing today was at the point where I’d be asking for serious drugs in hospital. Or at least that gas which makes you forget what is happening. That’s probably why my go to before I had baby #2 was to take Mersyndol and be knocked out for the day. Normal pain killers don’t do a thing, because it’s caused by the nerves.

It’s painful enough to have me in tears from it some of the day…because it stops me doing any task I want to do. And after a sleep of a few hours, my brain says “Nope, not going to sleep any longer, but as you can’t get up and do anything, I’ll just start thinking about all the stuff you want to do and make you feel worse’. My GP has always been wary of trying anything stronger. And by the time I get to a neurologist appointment, I forget just how much pain I am in those days and to mention it. Something I must learn to do better…report on ALL my symptoms that have been happening. There’s probably an app for that! Multiple sclerosis pain. MS pain

Is it just me?

And I’m not the only MSer who reports that pain can be a deal with Multiple Sclerosis. Check any online MS forum, and there are many others reporting varying degrees of pain from things to do with their MS. A biggie can be the MS Hug, which thankfully I haven’t had since my first year of diagnosis. Multiple sclerosis pain. MS pain

So if you have just been newly diagnosed with MS, and are asking your doctor those questions of what you can expect with this diagnosis, and will there be any pain, remember they may not know the true answer for your body. It might not be their medical definition of pain. But if it hurts you, I surely class it as pain! Multiple sclerosis pain. MS pain

Interested in knowing more about what life with multiple sclerosis is like? Check this out.

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

18/07/2017 By Savanna Robinson 1 Comment

Hi! My name is Savanna and this is me living with MS. The MonSter which is Multiple Sclerosis. I’m also a Spoonie.

Not every person who has MS is incapable of walking and uses a wheelchair. This was the image that many people had when I was young and would do the MS Read-a-thon in school. (I know that’s what I thought all MS people were like at that age!) Now I know differently! Most MSers look quite normal from the outside usually, as a lot of the symptoms are invisible. It’s hard to see numbness and sensory problems when you are just looking at a person.

I’ve had 3 major relapses with my MS (even though the minor relapse of symptoms is quite significant to you still as a person, neurologists think they don’t count). I’ve never needed a wheelchair or cane to walk yet. I have had some cases of my walking being greatly affected though! Think waddling like a heavily pregnant lady and feet refusing to pick up off the floor at all! Enough that the Occupational therapist left me a walker ‘just in case’.

So here is a sample of 2 days in my life as an MSer.

Day A-

It’s hard to get out of bed as I rarely feel truly rested, especially with a toddler who still wakes occasionally at night. It takes an hour to get breakfast for my toddler and myself…my mind just seems to take longer times to process stuff in the morning. We go to a mother’s group playdate, where I get to chat with other mummy’s going through similar stuff with their child. But I spend a lot of time chasing my very adventurous girl. Lunch is had at home, right before her needing a nap. I hope that she’ll go down for a few hours, as my MS nurse insists I should rest (nap) while she does, yet I still have a whole list of things I need to do while she won’t be constantly on my lap. I just manage to doze off when she wakes up. More occupying the toddler inside (as it’s too hot outside for me) and trying to do things around home. Welcoming my eldest daughter home from school. Wondering if I have enough energy to cook something for dinner or if we have the finances to get take away. Bathing the toddler, getting her into bed…which still requires an evening breastfeed as she’s not convinced about this weaning business. Then trying to complete more tasks before bed, which probably won’t be overly late as I’m so worn out.

Day B

I’m in hospital to get IV steroids for a relapse that has been going on for over a week. I’ve had numbness/pins and needles in my legs up to my chest, and starting to get that duck waddle back again. My feet don’t pick up properly and trip over any uneven surface. I’m afraid I’ll drop my 11 month old as my limbs feel weak. My reflexes test has hyper reaction to them…extreme jolting movement when they do the bottom of my feet. My muscles ache as it’s over 36 degrees Celsius outside, and even in the air conditioning my central nervous system just seems to know.

Living with MS hospital bed Jamberry catalogues — Hooked up to my IV steroids, and doing business stuff to keep busy.

living with MS cute baby playing with mobile phone cover — Juggling a toddler and time in hospital.

And from one day to the next, I don’t know if it will be a Day A with basically no symptoms, but still have to watch myself to not over do it as I’ll pay for that with fatigue later on. Or if it will be a Day B…or worse!

I find I still try to keep positive about it all, as there are worse things I could have than multiple sclerosis. And it’s not much of a life if always looking at those negatives. Life goes on, whether we like it or not! We may as well try to enjoy what we can!

I hope you now have a clearer idea of what MS can be like. Click here if you’d like to read about what is MS.