Hey, hope you’ve all had one lovely Easter!
Just before Easter, we headed down to Devon in our campervan for a week. It was lovely and very wholesome. The weather – well it was typical British weather. But we made the most of it. In fact, with the wolf behaving so well, we did a lot of great walks, and some great cycle routes.
Don’t be fooled when I say cycling. It’s an e-bike using pedal assist for about 90% of the bike ride. But it stil counts right?
At first, it felt like I was cheating a little. But it’s really not. Pedal assist or not, it’s about getting out there and doing whatever you enjoy more. If you need a bit of assistance, that’s absolutely fine. Honestly, I wouldn’t be able to cycle without the assist. It would be too difficult, put my body under too much stress, probably make my illness flare up, and it just wouldn’t be enjoyable.
The Improvement
What’s really interesting is that, about a year ago, we hired some e-bikes on the Isle of Mull. I enjoyed it until halfway through the bike ride, my knees became so painful. It got to the point, I could barely pedal, as the pain was that bad.
When I started planning my Devon trip, I thought it would be nice to do some cycling down there. For anyone who doesn’t know, Devon is home to some of the best cycling routes. And knowing my illness has improved since our trip to the Isle of Mull, I wanted to give cycling another go.
So before the trip, I borrowed my mom’s e-bike. The week before we went, I went on the bike locally a few times, seeing how my knees would cope. My knees were absolutely fine, and I fell in love with cycling.
Just shows you that if you get on the right treatment, the right doses, things can improve. So if you are struggling with your condition at the minute, please don’t give up on hope.
Since my trip to Devon, I can’t get enough of my little cycling adventures. I’m literally out at any opportunity I get, discovering new country lanes near home. I absolutely love it! And the only pain I’m getting, is the pain in my bum cheeks from the saddle.
My Appointment
This week, I had my appointment with my rheumatologist. Things overall went well. I have, however, been referred back to Dermatology for my lupus rashes on my face. I use Tacrolimus ointment, but it’s barely doing anything to keep the rashes away.
What’s more frustrating, the combination of my treatment: Hydroxychloroquine, Methotrexate, and Belimumab should be controlling my illness enough to prevent these rashes. So even though I’m feeling a lot better compared to a year ago, my condition still seems to be quite active in my body.
Not only is it a loosing battle with my rashes, but my circulation doesn’t seem to ever be giving me a break. Just 9 weeks since my last round of Iloprost, I’ve been referred for yet another round. I’m in soooo much pain with my hands, especially my left hand.
My Amlodipine that I’ve been taking for the past year has now been stopped, as it’s quite clearly not helping with my circulation. And depending on what happens after this round of Iloprost, my next and only option is monthly top-up Iloprost infusions. Something I am desperately trying to avoid, yet if it works, could give me a lot of relief.
That’s it from me this week.
Until next time,
Goodbye for now.
Emma
xox
If you would like to be notified each week when my blog goes live, straight to your inbox, please subscribe here:
(don’t forget to check your junkbox for the confirmation e-mail!)
My book, How I Tamed the Wolf, Living with Lupus is available on Amazon via this link:
https://www.amazon.co.uk/dp/B09M73X2JQ/ref=cm_sw_em_r_mt_dp_MWAF58981F0VVMNRV1WN
Want to catch up on my previous blogs, head to: My Weekly Lupus Diary
