When I first decided to start this blog, I knew that one of the first things that I wanted to write about was the importance of standing your ground when it comes to deciding on the treatments that are right for you.
If you live with a skin condition, you will know just how much noise there is around what you should use, what you shouldn’t use, what you should cut out, what you should add in ….the chatter is endless. It can be utterly overwhelming.
However, it is important to remember that it’s your skin, your body and your decision as to the treatment you use.
Let me tell you my story…..
Just after the Covid pandemic, I had the worst flare up that I have ever had. My entire body was swollen and raw like I had been thrown into a fire and then dragged out backwards through gravel. It was so sore that I physically and continuously shook, I couldn’t sleep, my clothes stuck to my weeping body, it hurt to breathe let alone move and eventually I had to start bandaging myself just so that I could get clothes on to go to work.
I believe that the flare up was a product of the Covid jab and the intense stress that working in the hospitality industry at the time brought on (if you know, you know!).
I was given a course of Prednisolone (an oral steroid) by a doctor and the rebound effects when I finished the course were so bad that I was rushed to hospital because they believed I had Sepsis - the symptoms were
so similar.
At the time I was also reading a lot about Topical Steroid Withdrawal online and had followed a lot of TSW advocates on Instagram. I became convinced that steroid creams were terrible things and I should avoid them at all costs. I threw mine away and tried to heal myself with natural creams. Nothing worked and my skin and my mental health just got worse and worse. I genuinely contemplated taking my own life and it was only because of the love and support of my parents, my husband and my friends, that I pulled myself back from the brink and vowed to keep strong.
I went to my GP and sobbed because neither of us knew how to clear things up without using steroids. He referred me to a dermatologist.
She was hands down the most unsympathetic woman I have ever met! She told me straight away, without listening to my concerns, that I would need immuno suppressants.
Luckily, I had done my research on these before hand. My husband and I want to try for a family. With many Immuno Suppressants, you cannot even contemplate trying for children for three years AFTER taking them. I was 36 back then. I knew I didn’t have three years PLUS the time I would be on them, which could have potentially spanned several years. The tears came again. I begged her to see if we could try other options and she replied-and I clearly remember this - “Vicki it’s tough- you either want to get better or you don’t. So stop crying and go and get your bloods done next door so that we can start your course next week.”
Needless to say I left her office and the blood remained firmly in my body!
By then I was pretty desperate. It had got to the point that I was frightened to go to the loo because it hurt so much to take down my trousers, that I would hold myself until I was literally ready to burst. I lost a considerable amount of weight because cooking and even eating meals just seemed such an enormous effort. I was so low that even the things I used to love so much became impossible to do.
We all spent hours researching experts and eventually my in-laws found a private doctor, which my parents very kindly offered to pay for - they would have done anything to see me get better.
She was incredible!! She actually listened to my concerns about using oral and topical steroids and shook her head as I told her about my immuno suppressants experience . She held my hand and told me gently that there were plenty of other options we could try first. She told me that I didn't have to make the decision to sacrifice my future family just to heal my skin.
In the end, after a great deal of talking things through together, we decided that I would use a steroid cream to get things under control again- most of my body was infected which was starting to cause serious issues.
She gave me a very carefully structured programme with a weaning plan to ensure minimal damage to my system because she knew how concerned I was about using the creams. She was also the first person that talked to me about seeking a little support for my mental health which had been quite frankly savaged by the whole experience.
So, why am I telling you all this?! Well firstly I want to tell you that there is light at the end of the tunnel if you are going through what I went through. You can and will get better.
AND, as I said at the beginning of the article, it’s your skin, your body, your decision.
It’s so very easy to get wrapped up in social media and the things that you read.
TSW is very real, but there’s still much research that needs to be done around it and the methods that need to be implemented to go through it. Steroid creams gave me my life back and frankly I’m very grateful for that, even though I am aware of the risks that they pose. It only took a couple of weeks for my skin to clear and suddenly I was me again. We are only here once and I lost three months because I was too exhausted and too sore to live them.
You absolutely need to use these potions and lotions with GREAT caution. You MUST consult doctors and follow their plans, but, if they are right for you then you absolutely should use them.
If TSW is right for you then you should do it , but again approach with caution. Ensure that you have support from loved ones and get an understanding doctor on side . I am in awe of those who have weathered this horrendous storm, but for me right now this isn’t something that I can face. And that’s okay. I’m the only one living my life!
If immuno-suppressants are going to help you then please go ahead and take them,
But please, please do your research first. Make sure you talk to your doctor to understand completely what they mean for you and your body. Take time to really think. Do not let your dermatologist tell you that you have no other choice, because you really do.
Don’t be bullied into anything, if know in your gut that something isn’t right for you then please don’t be afraid to speak up. You have a right to ask to see another doctor if you feel that the one you are seeing isn’t listening to you.
You have a right to live your life, eczema or no eczema.
Whatever choice you make when it comes to your treatment I wish you a swift and successful healing journey.
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