What a couple of weeks it has been! I’m sorry there was no blog last week. You know how I said a few weeks ago if there’s no blog it probably means I’m somewhere out in the mountains, in Casper, enjoying life. Well, last week was quite the opposite! I was so poorly with the wolf! I was too poorly to pick up my laptop and write. Not often do I get as bad as that! Normally, I can still pick up my laptop and write, as really writing doesn’t take a lot of energy. But this time the wolf wiped me out completely!
Honestly, the last couple of weeks has been horrible! I got over the sinus infection and started making good progress with the wolf. I thought everything was moving in the right direction. I was listening to the wolf, giving my body the rest it needs to get well again. I thought, yes I’ve managed to fight my flare without needing an increased dose of steroids.
I Thought I Was At The End
I woke up on a Wednesday morning, feeling great! I thought yes, I’ve got through it! I was so happy! So I started doing a bit more that day, i.e. a bit of housework. It wasn’t anything strenuous. I didn’t go for any runs or climb any mountains. I just took the day easy, knowing my body was still quite fragile, as it always is coming out of a flare. I was hoping to get back to normal life the following day. I knew I needed to move my body a little that day, to slowly ease it back into the fast paste of life again.
However, that evening I went downhill so fast! I felt like I had been hit by a train! The pain, the fatigue, it was awful! Honestly, I do not know what I did to upset the wolf so much that day, for him to attack me as much as he did! He was so angry!
Needed Urgent Bloods
The following day I had an appointment with my GP. He wanted to send me to A&E for urgent bloods as I was neutropenia. I thought that was a ridiculous idea! Sit in a waiting room full of people who can have all sorts of infections, never mind COVID, with a low white blood count and low neutrophils. If I was to catch something, I could have been so poorly! I understand a low white blood count can be very dangerous, hence why I needed to be seen urgently, but surely there should be a better system in place than having to go to A&E and put yourself at more risk! I know A&E is now called ED and I know it’s for any kind of urgent care, which I guess it’s what I needed. But in that case, there should be a room that isolates immunosuppressed people from everyone else. Or even better there should be a Rheumatology emergency area I can visit for urgent bloods and treatment.
From 7mg to 30mg
To help to fight my flare, the doctor in increased my steroids from my normal 7mg dose, up to 30mg for 5 days. However, during this period, my Rheumatology nurse rang me and said going from 30mg back down to 7mg at the end of the 5 days is probably going to make me feel worse. Instead, she asked if I wanted to come into the hospital for a steroid injection. She said the steroids would last longer in my body and prevent that steroid come-down slump that I will probably get.
On Tuesday, after taking a higher dose of steroids for a few days, I reduced my dose back down to my normal 7mg dose. I then went into the hospital and had 80mg of Depo-Medrol injected into my bum. It was painful! I was then told it probably takes 48-72 hours before it starts to work.
The Side Effects Were Horrible!
That evening the side effects kicked in fast from the steroid injection. And not the side effects I had hoped for! I was told it probably would make me feel worse before I feel better again. They were not wrong! It was frustrating! I was starting to feel a little better on the oral higher dose of steroids, and then after the injection, I felt like I had been knocked right back on my recovery journey!
The next morning, I continued to feel worse. On top of everything my glands swelled up, and my mouth became full of mouth ulcers. It was horrible! It was only really by the Friday, coming up to my 72-hour mark from the injection, that I actually felt a slight improvement. But even that was only small! I was starting to doubt the injection! My nurse said to me when I had the injection, some people it works with, others it doesn’t. I was thinking maybe the injection isn’t for me. Maybe I’m one of these people who it doesn’t work on.
Finally, It’s Worked!
But today, I take it all back! I woke feeling like a new person! I feel back to my good old self and I’m so happy about it! Today is the first day I feel like my steroid injection has truly worked! I think it’s probably taken longer to work because I had messed around with my oral dose of steroids on the days leading up to the injection. Going from a 30mg dose, straight down to a 7mg dose, then an 80mg dose. My poor body must have been so confused! It’s been through so much!
Fingers crossed this nightmare of a flare-up is at the end! Still taking it easy today, as I’m scared to knock my body back. But honestly, I feel like I could climb a mountain today. That’s how good I feel! But don’t worry, I am sitting resting, giving my body an extra day of rest, so I can start the new week feeling strong as possible. It’s so hard though, as I’ve got that steroid adrenaline rush, making sitting still and resting very difficult!
All Because Of The Heatwave!
This nightmare of a flare was all down to the crazy 2 hot days we had 3 weeks ago! Honestly, I do not know what I’m going to do next time we get freakily hot weather like this again! After posting my last blog, speaking to so many of you who have suffered flare-ups too from it, makes me so sad! I think one thing I am going to purchase is a little air conditioning unit, as I know some of you have said they can be a big help.
Anyways, that’s it from me this week. My white blood count is still low but increasing. Got more bloods on Wednesday, so hopefully, it will have improved even more by then. Steroids often help to increase my white blood count, so should be all ok.
Until next week,
Goodbye for now
Emma
xox
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