invisible symptoms

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?

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.

beautiful lady's eye with single tear running down side of face.-Living with depression in marriage blog post

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.

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Having Cataract surgery – a patient’s view with cataracts

29/04/2018 By Savanna Robinson 7 Comments

Having Cataract surgery a patient’s view eye surgery woman with sunglasses after surgery

I just had cataract surgery yesterday on my left eye, for a cataract that’s been there since 2005 when I had glaucoma surgery. It’s been something I’ve been mulling over for a few years. Every medical specialist who looks at my eyes always pointed out the lovely star shaped cataract sitting there, and were amazed that I could actually see through it. So seeing there are probably a lot of others out there waiting to have the same procedure, I thought I’d write a quick post about having cataract surgery – a patient’s view with cataracts. What it’s like to experience it.

What are cataracts?

Cataracts are a clouding of the natural lens of the eye. It’s more common than other eye conditions and the leading cause of blindness worldwide. There are numerous conditions that can cause the formation of cataracts including high myopia, eye surgery, prolonged corticosteroid use, previous eye injury or inflammation. I’ve had all of those (along with my other conditions), but my optometrist is of the opinion it was caused by the glaucoma surgery.

Deciding on surgery

When you are first deciding to have (or told you need to have) cataract surgery you will be given a lot of literature about the procedure, and possibly even shown a video describing the procedure used by your doctor. It can be a lot of information to take in, and seem a little scary too with some of the risks.

Your eye specialist will take quite a few measurements of your eye/s to check suitability for the procedure they have in mind. And then more measurements for the artificial lens to be ordered. You may be given a choice of a few types of lenses that will replace your natural lens, or you may only be suited to one type. (Upon reflection given my previous surgery and ongoing glaucoma, my doctor decided that lenses fixed for distance vision were best for me).

Having Cataract surgery a patient’s view eye surgery woman with glasses for short sightness before surgery and woman with eye patch after first cataract removed — The morning of surgery. Last moments wearing contacts or prescription glasses.

Surgery Day

On your surgery day you will be required to fast prior to your booked time, due to sedation being used in the procedure. It’s only a light sedation with some local injected around the eye…they don’t want you moving during this delicate procedure. You may be required to finalise some paperwork on arrival.

You then have a nurse see you for preparing you for surgery. I was given a gown over my comfy day clothes and a cap to cover my hair. Then some local anaesthetic drops were placed in my eye. Next a tiny sponge with dilation solution was inserted in my lower lid (apparently my eyes are a bit slow to dilate as they had to put extra in a little later).

After a little wait, I was then put on a surgery bed and was visited by the anaesthetist. A canula was put in one hand, and some sedation administered. After that you get quite a bit groggy. Awake, but not really feeling anything much and wheeled into the surgery.

They tape your other eye closed and you have a surgical drape over your head. But with so much anaesthetic around your eye and the sedation, your eyes really can’t see anything while the surgery takes place. For which I think we’re all thankful. We don’t really want to see all that they’re doing while we’re still awake.

It wasn’t a terribly long operation. Around 30 minutes. Most of the time is spent in the pre and post operation activity.

Post-surgery care

After the surgery had finished, I was wheeled back out and a nurse put some ointment in my eye (which I could not really feel to know if I really was closing it for her) and an eye patch on.

A bit of time waiting there and then I was helped up and out to another room to have some sandwiches (the staple of hospital food). And given my list of post-surgery instructions. Be sure to ask any questions you may have in regards to medications to take after, or other instructions. I take a set of eye drops already for my glaucoma at night, so checked I still took those as usual after my post-operation set of 3 eye drops.

You will need to be driven home by someone else after surgery, as you can’t drive for 24 hours afterwards. If your other eye needs glasses or a contact lens, you can still manage those. I had my right contact lens in (as my myopia is so severe I wouldn’t be able to do anything). But in the evening when I took that out for overnight cleaning, I was able to place my glasses on over the eye patch…enough to see.

All the sedation takes a while to wear off, but afterwards you may need some painkillers. You did just have delicate surgery to your eye after all! I had Panadol in the evening and again in the morning after. So far I haven’t needed anything more. I did find the eye patch most uncomfortable for the night, and didn’t really sleep well with it (though a toddler sharing my bed could have been keeping me more awake too). Next time I may ask for some sleeping tablets to help with that first night. (I’m due to get my right eye done in two weeks time).

Having Cataract surgery a patient’s view eye surgery woman with sunglasses woman after using stinging eyesdrops — It’s quite bright after surgery and those drops do sting for the first few days.

The days after surgery

The next day you may be booked in to go back to the specialist to have the eye patch removed, or be told to remove yourself if your next appointment is more than a day away. I had to remove mine at home, which I did gingerly as it felt like half my hair had got caught on the ends of it. I kept my eye closed for that as was a bit afraid of the result and what the vision would be like. When I had glaucoma surgery my vision had been blurry for a day or more after.

I then dashed off to a darker room to try opening my eye. And was pleasantly surprised at the clarity in the vision from my new lens. But opening that eye in a room with a light on hurt my eye and made it water, so I had to resort to wearing sunglasses inside for half the day. Not something you often get to do.

And it is true that you cannot adjust your sight in that eye with a new lens to be able to read. At first during the day, any writing I looked at I couldn’t make out head or tail about, except that I knew it was writing. Later on as I adjusted to it, I could make out some huge writing on things. But that was it. I’m hoping I won’t have to wait too long after my second operation to get reading glasses, as my jobs heavily rely upon it. Plus the fact I love reading for enjoyment too!

Having Cataract surgery a patient’s view eye surgery woman with reading glasses and before/after eye surgery — Two eyes done now and needing reading glasses to see small print and things on my mobile phone.

The drops I find a pain in the time it takes to do them, 5 minutes apart between each, but only one I find painful when put in the eye. All the rest are easy to do. Luckily after 14 years or so experience with glaucoma drops, and longer wearing contact lenses, I’m quite adept at doing multiple eye drops. If you are not, you may need to enlist someone’s help for the month you have use them.

Follow up visits

Next week I go back for the measurement for the other eye, and my second surgery will be 2 weeks after the first. (It’s not actually removing a cataract, but is replacing the lens as my vision was too great a difference to have nothing done with that eye). At least it shouldn’t be as scary as the first one was…worrying the night before and the wait during the day till my surgery time. I know now having experienced the first one. Hopefully this post has helped explain the procedure from a patient viewpoint and made it a little less scary for you too.

Having Cataract surgery a patient’s view eye surgery single eye reading glasses eye surgeon in surgery Quote Breath Just Breathe

Update

Now that I’ve had both eyes done, the vision is great for distance. I’m still adjusting to the need for reading glasses for small print, and finding the right size for using computers, but a very good result still!

Comment below if you have been considering surgery or had it yourself.

Reference http://www.allaboutvision.com/conditions/cataracts.htm

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

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

Reading with infants- tips to make reading with toddlers easier

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 is living with 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 (people living with MS) 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.

Living with MS v2 pinterest womans hands holding cup

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

living with MS woman hooked up to IV with toddler plahing in lap

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.