Hello, dear readers!
Today I am writing in English on this blog for the first time, so please excuse me my writing mistakes. 😉 I have been inspired to share my story, thoughts, and life philosophy with a wider audience by my very dear friend. I am happy to have her, just as I am grateful for all of you, who are honestly most beautiful and courageous people out there! You have seen and been through hell, and you keep on smiling and fighting, day by day, week by week, month by month. You inspire me beyond words!
I come from a small, yet beautiful country Slovenia, laying in the center of Europe. (Check it out and visit us sometimes 😉 http://www.traveltipy.com/most-beautiful-places-in-slovenia/). There are only 2 million people inside our countries borders and in our FB support group, there are already 450 members, which is crazy if you ask me. Especially because the group was formed just a little more than two years ago! The number is rising crazily fast and if we add the huge number of all the people who don’t know about TSW, I don’t dare to imagine what the number would be!
But let’s leave controversy of the existence of Topical Steroid Withdrawal behind. What I will be talking about here, is a little about my journey through Topical Steroid Withdrawal and a little about what I learned about myself and about life through that process. A life perspective I gained is a really positive outcome of the withdrawal for me.
I am in Topical Steroid Withdrawal for 2,5 years now. My worst months were months three to seven when every day was terrifying, the nights were pure hell and the symptoms were unbearable. Only you know what I mean with those words. And as you know the story, let’s skip the details. With month seven I started to see little improvements, and I gained hope that it will soon be all over. Ha! In the face! From the month seven on I had just one or maybe two major improvements, which were a life saver, but still … of until now I am trapped in the circle of improvements and worsenings of the condition, on and on and on and on.
I will post a few pictures of my progress later on. 😉 But first,
Although the TWS is the worst thing you can imagine going through, on the other hand, IT ISN’T! It sure is in the matter of suffering, since, well, I am experiencing it and I read many people’s experiences, saying that TSW was worse for them than chemotherapy or mastectomy or other similar conditions or treatments. But … it isn’t life threatening! It isn’t life lasting! It leaves us hope. We know that – somewhere far away in the dark – there is the light just waiting for us to reach it.
And we have an amazingly supportive community around us, which is a huge privilege! Not until I started with TSW, I have met or been in contact with so many amazing people, who take their time to encourage others, although strangers, listen to them and be simply supportive.
I think that we have all majorly changed through that journey. We felt the pain, so immense and deep that we became much more empathic to each other. TSW support groups are so filled with love, good intentions and willingness to help, that if people in the senates or at other important positions would afford that kind of empathy, the world would be a nicer place. We have to be proud of that!
We have people among us that are so courageous and brave, that I can’t find the words to describe them. Like Briana Banos, who travelled the world to film the documentary of Topical Steroid Withdrawal and all those who shared their story for that purpose (Nina Ajdin, Douglas Maddy, Nina Marshall and many more!). And all the others who are raising awareness and doing all they can to educate and help other sufferers – even if they have limited physical abilities or low financial means due to TSW.
I believe that we can take a positive outlook on the withdrawal, even if it is extremely debilitating for us and our loved ones.
It is a hard decision to make.
But it is worth making.
When we stop blaming ourselves for the position we are in, it is all easier. We have to put the burden of the guilt and self-hatred aside and acknowledge that this might be our life lesson. Somebody else has a different one, which is difficult in a different way, and we may not like ours, but let’s face it – it won’t just go away.
It is not fair! It shouldn’t be happening. But it is. So why took it in a destructive way if we can learn so much from it!
IT IS NOT OUR FAULT! Let’s behave accordingly. Let’s be nice to yourself. I am talking about our inner voice that plays a huge role in our understanding and acceptance of the situation.
Why does this have to happen to me?? Why me?? What have I done wrong? They did that to me and I have to pay for it! This is not fair!
That is happening to me and that is okay since that is the best thing I can do for my health and for my future in the giving situation. I accept it. What can I learn from it?
We are trapped. Would you rather be trapped with the version of yourself that encourages you or with the one that pushes you down?
I know, it is easy to talk. When you are at your worst, you can only deal with the pain, nothing else. And many don’t have the support of their loved ones and are in deep financial crises, or even in many different life crises all at once. But in those cases, it is even more important to encourage and love yourself. And to stop self-blaming.
Let it go. Accept. Breathe. Embrace.
Be your own biggest ally. Encourage yourself because (maybe) no one else will. Love yourself. Know that you deserve love and happiness. All that is happening to you – it’s NOT YOUR FAULT! Know that everything will be ok. And that you are a beautiful soul.
If you are at your worst, keep breathing and don’t forget that THIS WILL END! Your strength is endless and your body is working very hard to recover over and over again. All that is strengthening your mind and your body too. You will be thankful to yourself in the future. You will be thankful to yourself soon.
I think that I will stop here for now. I would be very grateful for any kind of response to that blog. If you wish to read something similar soon again, let me know.
I hope that you feel ok and that you love yourself through that hellish process of TSW.
Love to you beautiful sufferers and all your amazing support systems (families and friends) <3,
(journalist by trade, digital marketer by job, words and people lover by heart)
P.S.: You can check my ‘journey’ below.
<3 <3 <3