Hello! It’s been a little while since I’ve appeared on here! Honestly, life has been crazy lately, but crazy for all the right reasons! I was wondering if I would even find time to write today’s blog. But as I promised, here I am with my final blog of 2024!
I’m up bright and early, sat on the couch with my heated blanket, sipping coffee, feeling all cosy with the Christmas decorations, trying to get the blog written before I head out to my mother-in-laws for a mini Christmas Day.
The festive period is always manic! There’s always so much going on, so much you want to do, yet there just doesn’t seem to be enough days!
Our Final Van Trip of 2024 Didn’t Go Quite as Planned!
Since we last spoke, we’ve been to Edinburgh Christmas Markets in Casper. The markets were absolutely fantastic! Not only are they in a beautiful setting, but I also loved all the Scottish homemade gifts they were selling, the choice of Vegan food at the stalls, including Vegan Haggis pie, and to top it off, they even had non-alcoholic mulled wine! Something, I rarely see at Christmas Markets!
After spending a day at the Edinburgh Christmas Markets, we headed up north to the Lomond Hills to carry on with our mini Scottish trip away. But sadly, our trip ended quite abruptly when Storm Bert decided to make an appearance!
At first, we were going to find some shelter and just ride it out. We’ve been in many storms in the van, so we know what to expect and how to deal with them. We’ve survived nights in winds of up to 68mph, which honestly was scary and don’t recommend! And we’ve woken up in an unexpected winter wonderland. Funny enough, all in Scotland too!
However, after reading the Scottish Police advisory report ahead of the storm, we decided it was not a storm we wanted to ride out. With no winter tyres, no shovel, not knowing how much leisure battery power we had left after already being off the grid for two nights, and a limited supply of water and diesel supply for heating, it was just too risky! So we made the sensible decision and off home we went!
Here’s a little photo dump of our short but sweet trip to Scotland, marking our final van trip of 2024:
Other Festive Fun
Since our trip to Scotland, we’ve had more festive fun! We visited our village’s Christmas Market, had a great night at Alex’s work’s Christmas do, and enjoyed a trip to York’s Christmas Market in the tail end of yet another storm, Storm Darragh.
Here’s a little photo dump from the past two weekends, including the flooded River Ouse after Storm Darragh:
Update on the Wolf
Ok, the real reason you are here reading my blog, you want to know how the good old wolf is behaving. I really don’t want to jinx anything, but I’m doing really good at the minute! Not sure what’s happened over the last couple of weeks, but things are good, really good! In fact, I feel the strongest I’ve felt all year! The wolf seems to be happy and I’m pretty ecstatic about that!
The last couple of weeks, I honestly feel like I’ve got my life back! Not quite well enough to be climbing mountains again, or running. But, for the first time this year, I feel like I’m heading in the right direction. And just maybe, 2025 these goals may be possible to achieve once again!
I finally feel like my Belimumab is working!
Why Now?
I was sat thinking the other day, why now am I starting to feel a lot better? Why it’s taken so long? But then I think back to everything that has gone on since starting my Belimumab.
When I first started my treatment, I was dropping my steroids down from 10mg to 7mg, which of course caused a lot of stress on the body. I then had low iron and B12 levels, another stress on the body. My tablets to treat both, caused me a lot of gastro issues, another stress on my body. I then went into the hospital for my Iloprost infusions, another stress on my body. I then was without my Belimumab injections for a couple of weeks after a delayed prescription, another stress on my body.
It’s only these last few weeks, that my body has finally had a break from everything. It’s these last few weeks my Belimumab has had the chance to work to its potential.
The New Year
Hopefully, ending 2024 on a high with the wolf, is a sign of what 2025 has in store. Hopefully, 2025 is going to be the year of peace with the wolf.
If my good health continues over the next couple of weeks, on the 1st of January the plan is to start tapering my steroids down. Something, I was meant to do back in September, but unfortunately, my body just didn’t allow it. But now, I feel like my body has become strong enough to do so. Strong enough to cope with the tapering of steroids.
I have a big appointment with my consultant in February. An appointment were everything to going to get reviewed, including how I’m getting on with my Belimumab. So the plan is to get my steroids down from 7mg to 5mg by the time I see him, or as close as I can. It might mean my health might deteriorate a little over the start of the new year, but it’s short-term pain for long-term goals.
Rash from my Methotrexate
I need a bit of advice guys, please. Is anyone on Methotrexate injections? I injected myself last weekend, and for some reason, I didn’t push the needle into my muscle tissue probably. This meant the Methotrexate ended up in the layer just under my skin, leaving a yellow stain underneath my skin. A week on, I now have an angry-looking fresh rash from it. Has this happened to any of you before?
That’s it from this week’s blog! I head out to Kuwait and Dubai next week for Christmas. Honestly, I cannot wait! I am beyond excited! It’s currently 24 degrees out there, a perfect temperature! As Goldilocks would say, it’s not too hot, it’s not too cold, it’s just right! Hopefully, the wolf will continue to be happy, and I’ll be back in the new year to tell you all about it!
If you are interested in following my travels over Christmas, I will be posting daily over on my Instagram account: https://www.instagram.com/livingwiththew0lf
After the trip, a full YouTube series will be coming to our channel too: https://www.youtube.com/c/TheAdventurousPair
Have a wonderful Christmas and a very Happy New Year!
To all my Lupus warriors, I hope the wolf is kind to you this Christmas and for any one of you who has had a challenging year, I hope 2025 brings you a better year!
See you next year guys!
Emma
xox
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Want to catch up on my previous blogs, head to: My Weekly Lupus Diary
