Happy Sunday guys! Hope you are all well!
It’s been a few weeks since I last wrote a blog. Life has just been so busy lately, and for a good reason too! So, I’ve got a lot to fill you on and some very good news to share! đ
Friday 10th May
But let’s start with one of the most magical nights of my life…….Friday 10th May. A night I’ve always dreamt about, but never believed would ever come true! It was the night I saw the Northern Lights dance away with my naked eye, in my OWN BACK GARDEN!!!!
I know I’ve captured them before, earlier this season from my own back garden with my camera. But this time it was different! They were visible, and very visible with the naked eye! They were that strong, my camera didn’t need to be on a long shutter speed like normal. And they weren’t just dancing in the north. They were dancing in the north, south, east, west, and above! In fact, this show was better than the ones I’ve seen in Finland and Iceland!!!
I just laid on grass, looking up, watching the lights dance the night away! It was truly magical!
What made it extra special, it was World Lupus Day and the colour purple, symbolises Lupus. The sky had lit up purple to celebrate World Lupus Day! đ
Albania Was Great!
Wondering why there’s been no blog the last few weeks? One main reason, I’ve been busy road tripping around Albania!
Honestly, we had such a fantastic two weeks travelling around Albania! The country is absolutely breathtaking, the people are sooooo lovely, and it’s dirt cheap! Some nights, we were paying as little as ÂŖ5 each for our evening meals! Crazy!
Here’s a little photo dump from our trip:
The Wonders of Steroids
Healthwise, I felt pretty good! The wolf did try and play up at times. But overall, I actually felt the best I had in a long time! All thanks to my dose increase of steroids! In fact, the wolf behaved enough, I managed to enjoy three, small walks. This honestly made me soooooo happy!
After a year I’ve had, I never thought this was going to be possible! I had gone out to Albania, accepting I probably wouldn’t be able to the three famous walks in the areas we were visiting. I kind of accepted it, yet deep down I felt heartbroken!
But, as much as I thought doing the walks was going to be unlikely, I had a tiny, little bit of hope in me. I had increased my steroids the week before I travelled out to Albania. In that week, things improved massively! Each day, I was feeling stronger and stronger. So with that bit of hope, I decided to pack my hiking gear. I still wasn’t convinced I would manage any walks, but I thought just incase. Just incase, the wolf decided to be kind. Just incase, the dose increase of steroids was going to give me that bit of extra strength.
Honestly, I’m so glad I did!
I always say, when you live with the wolf, you have to prepare for all possibilities! These trip proved just that!
Here are some photos from the three walks I did, and just how happy I was:
I’ve Nailed Tapering Steroids to a Tee
The week before Albania, I had increased my steroids from 10mg to 30mg as I was in some kind of flare-up after having my Iloprost. I then spent the whole two weeks in Albania, slowly tapering them down. Not too quickly so things would flare-up.
In the past, I’ve been terrible at dropping my steroids back down. I used to be in a rush to get back down to my maintenance dose. It used to make feel so unwell! One minute, my body was having a good boost, the next it wasn’t. Now, I’ve learnt to be patient! So now I drop them by 5mg, every three days. Then when I get to 15mg, I drop them by 1mg every three days. It’s a slow process, but worth it!
I came home from Albania, back on my maintenance dose of 10mg, and felt great! In fact, that first week back at home, I felt the strongest I have, all year! I was soooo happy!
Food in Albania
One thing which didn’t go so well on holiday, was the food I was eating! I spent almost the whole trip with a bloated, uncomfortable belly, feeling sick at times, and sat on the toilet at times. Let’s just say, Veganism isn’t really a thing out there, or not in places I visited!
I do not tolerate dairy very well, and my body doesn’t digest meat well. But many days I had very little choice in what I was eating. I either ate something with meat or dairy in, or I went hungry! Thankfully, I don’t suffer from allergies, and it is just food intolerances. But it’s not nice having an uncomfortable stomach day in, and day out.
At times like this, I miss travelling in our van! When we go away in our camper van, I can go to the supermarkets, I can buy and cook the food I know will make me feel well. When I was in Albania, especially at breakfast time, we were given a plate of food in front of us, a traditional Albanian breakfast. Their breakfast is made up of an omelette, a few slices of goat’s cheese, olives, cucumber, tomatoes, and some Albanian pancakes. We had that almost every single morning! For lunch and tea, they eat meat and a lot of it! It was rare I could even find a Vegetarian option on the menu, never mine a Vegan option. And when I did, it was something like their traditional spinach pie, which had cheese in it.
Let’s just so, that by the end of the trip, I was looking forward to getting home and eating food that made me feel well again!
It’s such a shame my body can’t tolerate more food as Albanian food is lovely!
Here’s a photo of the traditional Albanian pancakes:
That’s it from me this week! Good news, I have started my new treatment, my biological Belimumuab. I’m going into hospital tomorrow morning for my 2nd dose. But I’m going to leave all this for next week’s blog, as I feel this blog is long enough for this week! This is trouble when you take a few weeks off, there’s just too much to write!
Until next week,
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
