The Dreaded Pred...

After being diagnosed with a chronic illness, taking medication daily and the thought of taking 10+ pills every morning for potentially the rest of your life becomes something that is considered normal.

If your illness happens to be an autoimmune diseases like mine, over time your medication and doses will most likely change but the one medication that always seems to pop back up into the picture is one that currently thinks we need to be inseparable and are best friends and that is …. PREDNISONE! (More commonly referred to as steroids).

In 2019 there was only 2 and a half months where I was lucky enough to not have to take any steroids but throughout the rest of the year I managed to consume 9910mg of the magic pill (this was on top of the 3 doses of IV Methylprednisolone I had that year which was in total another 9000mg of steroids)! As we are still trying to work out what drug will work long term for controlling my relapses, I am currently reducing down my dose again until I get to 20ml which is what I will stay on for a while. Fingers crossed though 2020 is the year of a new drug that actually works meaning we can then work towards reducing the steroids even further and hopefully getting off them completely.

Prednisone is a drug that has been around for more than 60 years and is one that a lot of specialist lean towards when you are suffering from inflammation because out of all the drugs out there this is one that time and time again has been proven to work. Don’t get me wrong, this drug definitely does work and in my situation it has been the one thing that has helped keep my symptoms at bay and has stopped more damage from occurring so I haven’t gone blind but if you are on steroids currently or are about to go on them you would know long term steroid use also comes with some side effects which unfortunately aren’t the best not only physically but mentally.

For me personally, the most common side effects I get from being on pred is insomnia from time to time, an increased appetite, the beloved moon face, weight gain and now the one thing I was never told could happen… a reduction in elasticity in my skin which has caused really bad stretch marks. I think out of all the medication I take this would have to be the one I dread taking every day as being a 22 year old female, knowing that what I am taking is changing my appearance and it is completely out of my control is what mentally gets to me. Although everyone says the water retention will go and the stretch marks will fade, watching your body change whilst dealing with everything else we already have to go through mentally can be a challenge some days, especially when there is no date in site that you get to stop taking them.

If you are reading this and don’t take steroids yourself first of all, congratulations! I hope for your sake your lucky enough and get through your life without ever having to take them but please remember although we may bring up the fact we take steroids, or the fact our faces are so round we would knock down all 12 pins in the bowling alley, please refrain from telling us how much the steroids have changed our faces, let alone referring to our angry moments as “roid rage” or better yet saying we now look like a “cute chipmunk” (believe me this is only the start of what I have heard). Don’t get me wrong, I know most comments that people make aren’t because you are intentionally trying to be mean and bring us down but we already deal with our own thoughts of how we look daily, being constantly reminded that other people notice the difference too doesn’t make us feel any better.

Now to everyone out there who is has previously been on steroids, is currently taking them or about to start, even though I may sound like a negative Nancy and clearly don’t enjoy taking them, if your specialist has recommended them for you, it’s clearly the best medication for you to be on in this current moment for your health. No matter what people say the way we look is always going to be important to us and we want to look our best we need to remember being healthy is THE MOST IMPORTANT thing! This is one thing I am constantly reminding myself, although the weight gain, stretch marks and moon face really get me down and I wish I could go back to skinny me over night, if I was to just stop taking my steroids cold turkey I would potentially lose my sight and not be able to see at all.

In life shit happens, we can either look at things and only notice the negative in a situation or we can try and focus on the road ahead and see the positives. For me, being able to see is my positive and something I am thankful for every day. Yes you are going to have days where you look at yourself in the mirror and just want to cry, you will ask why me and wish you could just wake up and it all go away but you need to remember the way we look is not the be all and end all, there are people out there that care about us and our disease shouldn't control us. Talk to someone if you are down, if you are having a bad day take a step back and think of all the GOOD things in your life and remind yourself you are going to have some bad days here and there but if we take back the control and live every moment to the fullest we still have plenty more amazing opportunities in our journey ahead of us and these shitty moments won’t last forever! (As much as I hate it just so you don't feel like you are all alone when it comes to the moon head, the photo below gives you an idea of the amount my face has changed since being on steroids #embracetheface)