Honestly, I just want a break! A break from constantly fighting against the wolf! This week has left me feeling pretty broken!
I knew my steroid reduction would never be a walk in the park. I knew it was going to be a tough couple of weeks. I accepted that and prepared myself for it. But after putting yourself through it for a week and a half, then having to give up on it, when you are just starting to see the light at the end of the tunnel, it’s heartbreaking!
The First Week And A Half
The first week and a half were going smoothly. I felt tired, I felt weak, but I was ok. I was plodding along through each day, accepting that this was just the normal part of the process of reducing steroids. It was hard, but I knew it wasn’t going to last for long.
By Wednesday, a week and a half into my steroid reduction, I started to feel a slight change in my energy levels. It was a sign my adrenal glands were starting to kick in. I was so happy! They say it can take up to two weeks for this to happen. I felt as though everything was going to plan!
Then The Wolf Got Involved!
However, Thursday things soon changed. My chest was already feeling inflamed. It had been since the Friday before. It wasn’t liking the steroid reduction, but I was just kind of hoping it would just settle down eventually, as it adapts to the new dose. But then things got a lot worse. My whole body began to flare! The pain was just horrible!
Friday morning, my steroid reduction stopped, and an increased dose of steroids was started to try and heal the flare. The week and a half of suffering, was all for nothing! Instead, it’s just left in my pain and discomfort! I was heartbroken!
I’ve Had Enough!
I’ve had enough! I do want to get my steroids down to 5mg for my long-term health, but I need a break. It’s been one thing after another for me since last summer! A just need a couple of months off from it all, minimum. A couple of months were I can just enjoy life without having to fight the wolf in full force every day.
I will try again, once my body has recovered and gained strength again. I’m not prepared to give in, but I do want a break first! I need a break! It was always going to be 50/50 if it was going to work. It’s one of them things you have to try to know how your body is going to respond. But at the same time, it’s such a horrible thing to have to do. The pain and suffering it causes, both physically and mentally.
If you know anyone who is trying to taper down steroids, give them all the love and support you can, they need it! If you are trying to taper yours down, ask for all the support you can get, you need it!
Our Anniversary
Next week I go to Poland to celebrate my first wedding anniversary. As much as I will not let the wolf ruin our special trip, it’s just not as enjoyable when you are unwell. I have done a lot of research into any help I can get out there if I need it. I’m really hoping I won’t need it! The higher dose of steroids should start to make me feel so much better in the next few days. The main worry I’ve got now is if my inflamed chest turns into a chest infection, which it has been known to do previously. I’m just praying it doesn’t!
I’ve got good health insurance, I have a sunflower lanyard in case I need assistance at the airport. At Auschwitz-Birkenau, they have wheelchairs I can use if my fatigue is too bad and I can’t walk far. When we head up into the mountains, there are cable cars that I can go on, which go to scenic viewpoints. Instead of hiking, I can sit in the refugee at the top, have a coffee, and enjoy the view. I know it’s not the same as going for a good hike, which I love doing. But it’s about adapting, and making something good out of a bad situation.
That’s it from me this week. There will be no blog next weekend as I’ll be in Poland. Sunday is our actual anniversary date. Hopefully, this time next week, I will be enjoying a lovely coffee, surrounded by the Polish Alps, feeling so much better! As long as my chest doesn’t develop into a chest infection, I should hopefully be so much better, and hopefully, be able to enjoy the trip as I had always hoped to!
Whatever happens with my health, I will not let the wolf ruin our first wedding anniversary!
Until next time,
Goodbye for now
Emma
xox
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