Lets talk body image ...

In 2020 one of the most common concerns of any young adult especially females is the way they look and the way others view them. One thing I have learnt over the past 3 years going through my medical journey is how important it is not to judge someone on their looks as you don’t know their story and what they are going through.

99% of the time most people would say I am a very positive person when it comes to my illness and everything I deal with. I have this way of just sweeping every hurdle under the rug and accepting the fact it is what it is but trust me if you are ever reading my blog and thinking to yourself – how does she not have bad days, or feel down … I do.

As we all know my battle with steroids and being on them for long periods of time along with the fact it is virtually impossible for me to reduce below 30mg without relapsing has taken a massive toll on my body and the way I look. As you probably read in my post about steroids I struggle constantly with my weight; in between going back to hospital in December to the end of January 2020 I put on nearly 10kg, but the worst side effect from them and what affects me the most is the stretch marks it has caused on my body. Even if you are lucky enough to not gain weight from steroids the longer you are on them your body stops to produce as much collagen which leads to low elasticity in the skin.

At the end of January, I decided I was going to really knuckle down and focus on getting fit again, forgot that I’m on steroids, try my best to lose some weight, tone up and get fit because let’s face it in exactly 9 months on Thursday I’m going to be a bride and we all want to look our best for our wedding day. I was off to a great start, eating well by tracking my macros, being conscious of what I was putting in my body and even went back to my boxing classes. The first week I went twice and managed to do my 10,000 steps every day, and last week I was able to step it up more by hitting my step count every day and attended 4 boxing circuits – I was feeling great and even better I had lost just over 3kg within the first week of February!

As the new week rolled around, I was excited to smash out another week of healthy eating, training and hopefully some more weight loss. I woke up Monday morning, packed all my food for the day and organised my gym clothes ready for when I finished work. By the end of the day I was feeling pretty tired but with that wedding body in mind I went home, got changed, went to the gym and smashed my workout. (side note – the weather on the Gold Coast currently has a mind of its own and the fact I train in a boxing gym that is a tin shed with no aircon, the humidity in there is literally through the roof so although I was a hot sweaty mess at the end of it, I was actually feeling really good and proud of myself for pushing myself to go and give it everything I had). I got home and was getting ready to get in the shower and that’s when it hit me and I literally just broke down – as I was getting undressed I happened to see my arms in the reflection and I hated what was staring back at me. When I first got the stretch marks on my legs I learnt to accept them and would tell myself that it’s okay because no one is going to see them and id tell myself the same thing when they started appearing on my hips but seeing them on my arms in a place that is clearly visible to the world really got to me. I sat on the floor in the shower and just cried because all I could think was no matter how healthy I eat and how hard I train at the gym until I stop taking steroids there is literally nothing I can do to stop them from growing, getting bigger or getting worse and that killed me a little inside.

I am lucky to have such a supportive husband to be who happened to see I was upset and literally just came and hugged me tight and talked me through it, reassuring me it’s all going to be okay and to look at the bigger picture – if it wasn’t for the steroids I would potentially be blind so we needed to be thankful that it is a medication that is easily available for me to access and use (in saying that if I was blind I wouldn’t see the stretch marks so that’s one bonus … lol only kidding).

Going through everything I have and seeing the way I have changed has really opened my eyes and taught me that when I see someone covered in marks, scars, is really big or looks so small they would snap in the wind; to take a step back and before I start to judge them, I now stop and think what they may be going through or have gone through and just think about how lucky I am to have my health and life; although my health isn’t perfect there is still always people worse off than me.

I have put photos below of my arms, legs and hips which was the hardest thing for me to share as it is my biggest insecurity but if there are other people out there experiencing the same thing I want you to know you are not alone. Although it is extremely hard because no matter what anyone says we all know the way we look is important (let face it who doesn’t want to look their best) we need to accept that our marks are a part of us and they make us who we are; they are a part of our story and our journey to finding the invisible fix…

The week that was ...

As the first month of the new year comes to an end I finished it off with a few fancy eye tests, a catch up with my neurologist and 10 vials of blood less.

On Tuesday morning I made my way up to Brisbane fresh faced, bright eyed and bushy tailed for a morning full of eye tests. Over the last few years since being diagnosed I have had countless MRI’s and ophthalmologist visits to track how my eyes are going but there is only so much they have been able to see. The ophthalmologist typically can only measure vision from the general eye tests/looking in behind my eyes and the although the MRI’s can show that there is inflammation on the optic nerve it can’t give the doctors much more information as to what is going on. My specialist had requested I go off to Queensland Electro-Diagnostic & Imaging Centre to have an Electroretinogram (ERG) and a Visual Evoked Potential (VEP). An ERG “measures the electrical responses of various cell types in the retinal” and a VEP “measures the functional integrity of the visual pathways from the retina to the visual cortex of the brain via the optic nerve.” The other great thing about these tests is it can give my neurologist an insight whether or not my condition is a demyelinating condition or not. Both tests were done by placing electrodes in my hair, around my eyes and also a fine thread electrode put in the bottom of each eye. It wasn’t painful at all, just left me with blurry eyes for a few hours as they dilate your pupils and your eyes can feel a little tired/strained as you are staring at moving objects, flashing lights and going between lights on and lights off for 3 and a half hours.

The next day I had an appointment with my specialist to go over my last hospital admission and talk about what’s next. He mentioned that in my last MRI I had just before I was discharged from hospital, there was clear inflammation on my optic nerves specifically at the back point where the nerve connects to my brain. He also mentioned that the second set of check-up tests I had done with ophthalmology showed no improvement in my vision but on the plus side it hasn’t decreased within the couple of weeks between the testing so that is always a bonus.

In other great news my application for my new drug infliximab got approved, so after having my normal monthly blood test plus the pre-screening for infectious diseases I am now all ready to start. Hopefully next week I will get a call with my appointment time and within the next few weeks I will be all locked and loaded ready to go. It’s going to start out as an infusion once every two weeks, then it goes to every four, six, then eight weeks. I still have to stay on all my daily medications (prednisone, mycophenolate, somac, resprim forte and vitamin D) but fingers crossed the longer I am on it, if it proves to be working I will get to start reducing my prednisone … HALLELUJAH !!!

For now we just wait for that phone call with my appointment time but I have a good feeling about this drug, this is going to be the one that works and I’ll be one step closer to succeeding my goal of a full year with no hospital admissions and getting off steroids!

How I stay so optimistic ...

When diagnosed with any illness you have two options. Option one; feel like your life is over, be sad and let the illness take over your life and everything you once enjoyed or option two; look at the positives, focus on the things you can control and try your hardest to wake up every day with a smile on your face and remember 9 times out of 10 there are still worse things that could have happened.

Obviously, you are going to have days where its hard and you will be tired, emotional and just want it all to end and go away – this is normal and you need to remember that. Especially when you first get diagnosed as you are still discovering it all for yourself but there will become a point where taking medication and having your standard symptoms become the norm. and that is the point where you learn to accept this is your new life.  

I know it doesn’t make sense to most people but if I am sitting at work with a headache or my eyes start to hurt it is such a common response for coworkers to say “why don’t you just go home?” If I was to just go home every time I had pain or symptoms I would never be at work and that’s just it, you need to keep going. Yes there will be days when it would be so much easier to just call in sick, roll over and go back to sleep but you would be surprised mentally how much better you feel when you get up, get ready and go to work – yes you may be in pain but it is so much better for your mental health staying in constant contact with others and even just being around others vs. hibernating at home alone.

Another thing I find really helps is exercising. Now don’t get me wrong I’m not perfect and I certainly don’t train every day of the week but even if it is something simple like waking up half an hour earlier so you can go for a walk will do big things for your mental health. Not only does it help if you are on medication like steroids as it is highly important for us to stay active to try and combat some of the weight gain that naturally occurs from our medication it also helps clear your mind and feel good about yourself.

Lastly, think about your future, make some plans and a list of goals you would like to achieve. If you have other things to focus on and look forward to it helps take your mind off your everyday issues. It’s all about looking at the bigger picture in life and not forgetting how lucky we are to still be breathing and alive – although its hard it could always be worse. I am lucky to live in Australia with such a great healthcare system where although at the moment it seems like a struggle to get the medication right and actually find a drug that works, I am extremely lucky to live in a country where the government subsides a hell of a lot for me. So yes, it’s unfortunate that I have a disease that could potentially take my vision and is something I will never get rid of but when I have such a good support network with a great specialist, loving family and friends and a great healthcare system fighting for me to get better why wouldn’t I want to look at the positive side of life …