I’m not having a good weekend! I’m sat in my bed writing this blog, with no plans to get out dressed today or even leave this bed. I’m dealing with one angry, unhappy wolf! He’s angry because of the stress I put him through with my Iloprost! He does this to me, nearly every time, and it’s rather frustrating!
To be honest, I thought I had avoided a flare-up this time. The first part of the week I felt ok, just very tired and weak. So I listened to my body, looked after myself, rested when I needed to, and didn’t push my body too much. I thought I was doing ok. I thought maybe this time, I’m avoiding a flare-up. But sadly, I was wrong!
By Friday I Was Not Well
By Thursday afternoon, I started going downhill. Early hours of Friday morning, I woke up feeling so poorly. I knew then, things had flared up. It was no longer just tiredness and weakness, I was dealing with an angry wolf!
This weekend the pain in my body, in my joints, has continued to get worse, my chest feels inflamed, my fatigue has left me feeling weak, and my nose has developed painful sores. This morning, I made the sensible decision to increase my steroids. I knew this was likely going to have to happen after my Iloprost, so I had extra steroids, in preparation. But honestly, I was really hoping I wouldn’t have to increase them.
My Belimumab Is Working More Than I Realise!
I was thinking this morning, that I haven’t had to increase my steroids since my last lot of Iloprost, back in April, which is fantastic news! This is my first bad flare-up since starting my new treatment, Belimumab. So all these times I question how well my Belimumab is working, it’s actually working more than I probably realise! And the only reason I am in flare is because of the stress of Iloprost on my body. Which to be fair, when I speak to other Iloprost warriors, it’s quite a normal reaction after the infusions.
My Iloprost
When people ask how my Iloprost went, it’s always hard for me to find the right answer. I look back at that week and say to myself it went well. But I say that because I managed to ride almost all week on the highest dose. So for me, I felt proud of my body, and the pain I managed to push myself through.
But in reality, when you look properly at my week, it was tough, it was rough! I was in pain every day. One day it got too much and they had to turn my Iloprost down. I was fighting a high temperature every day while on the infusions. But as soon as my Iloprost ended each day, and the saline flush was in, my temperature dropped back to normal. My veins were a complete nightmare! We had so many issues getting access. Then the ones they did get just became very sore, bruised, and kept tracking. In the end, I just had to ride my infusions out in pain at the canula site. As we were too worried we weren’t going to be able to get another access point.
The Nurses Are Brilliant!
I love the ward I go onto for my Iloprost! It’s a lovely little ward, with a fantastic bunch of great nurses! All of them are so caring, and will go an extra mile to make your day that bit easier on the Iloprost, which I can’t thank them enough for!
Also, because I’ve been on this ward a few times now, they know me, and I know them. Having a familiar environment, and a familiar faces, brings a lot of comfort when you are going through such horrible treatment.
Here’s a little photo dump of my week having Iloprost and the dramas with my veins:
The Difference
One week post-Iloprost, I honestly cannot believe the difference in my hands and feet already! It almost looks like I’ve had a hand transplant!
So I maybe feeling pretty rubbish with the wolf this weekend, and a week of Iloprost is rough, but the results make it all worthwhile! I just hope my hands are still looking like this in a couple of month’s time!
My hands, before and after:
Mentally, I’ve prepared myself to kind of accept I might be needing Iloprost twice a yearly. Speaking to other Iloprost warriors, twice a year seems to be quite the norm. If I think like this, and I don’t need it come Spring, I will see it as a bonus and be very happy. If I do need it, I will just accept it as part of my life, and try and be ok with it. If I get it in my mindset, every Autumn and Spring I will probably need a round of Iloprost, and tell myself that’s ok. Thinking like this, helps me accept it more.
Until now, I’ve just looked at it as if my body is failing me all the time, and keep questioning why I keep needing Iloprost. I question a lot, how did I manage to go a few years not needing it? But maybe I just got lucky? Maybe, I will get lucky again in the future? Or maybe this is my life now moving forward?
If you think about it, Iloprost isn’t necessarily meant to work for a certain duration. It has one purpose, to open up your blood vessels. Which, it works very well at doing! Once it’s opened up your blood vessels, it’s then down to your own body to not attack them again. Which, if you have an illness that does, it’s always only a matter of time.
That’s it from me this week. Hopefully, the next time we speak, I will be feeling a lot better from my increased dose of steroids.
Until next time.
Goodbye for now
Emma
xox
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