I’m home from what’s been the most incredible trip to the Isle of Mull! We had gorgeous weather, the wolf behaved, and we created many long-lasting memories! We honestly couldn’t of asked for a better trip!
Here’s a little photo dump of some of favourite moments:
Not Strong Enough for Mountains
I wasn’t well enough to climb mountains, which I am slightly gutted about! And I couldn’t manage long walks either! I feel like, even though my health has improved massively in the past year, since starting my new treatment, Belimumab. My body is nowhere near as strong as it was a few years ago!
It does upset me, but I am also incredibly grateful how far I’ve come in just the past year! Just been able to get out for walks, get on my paddle board makes me so happy! And if this is the best my health is going to get, I’m ok with that. I know just how quickly it can get taken away from me. So right now, I feel this is a gift, a gift I am very grateful for.
First Time on E-Bikes
We hired E-Bikes for a day. I’ve never ridden one before! It was such a fun way to explore Mull. It got us to places that were too far to walk to, yet roads were too narrow for our Campervan. However, I struggled with my knees. We only did 10 miles on the bikes, which I know isn’t far. But by the end of it, every pedal I did, my knees burned with pain. I honestly could have cried cycling back to the hire shop.
It’s frustating as I would love for us to get our own set of E-Bikes! Maybe if I can get my illness a bit more under control, my knees will improve?
A Phone Call with My Specialist
Just before I went away, my nurse rang. It was a very productive consultation! We discussed about increasing my Methotrexate injections, slowly, seeing how my body tolerates each increased dose. This, however, does mean I now need to get my bloods done every fortnight, which is a bit of a pain! Especially, since at the moment my nurse who does my bloods can only get blood out of one of my veins. No fault to her, it’s down to my poor circulation.
Hopefully, this increase in dose is the dose I need to get things that little bit more under control! Things are good compared to how they were, but I know the wolf isn’t fully under control. So hopefully this is just what I need…..’the icing on the cake’!
Referred for Iloprost
I don’t know if you remember me saying on my last blog, there were discussions about me going back into the hospital for another round of Iloprost. I have been referred, and now just waiting for a bed to become available for 5 days. Can’t say I’m looking forward to it, but I know I need it! My hands are currently a mess and painful!
I was on the boat coming home from Mull, and was on the deck taking photos, and my hands were purple. Normally, I don’t really pay that much attention. But I noticed a couple of people staring at my hands, and I didn’t like it! It made me feel quite self-conscious. Normally, I don’t think about my hands and what other people think. Just like when I’m covered in Lupus rashes. But this day, for whatever reason, it upset me. It was a moment when my invisible illness made me feel not so invisible.
Amlodipine
I mentioned how they have trialled me on Amlodipine to see if that can help with my circulation. I’m still taking it, but honestly, I don’t think it’s doing anything regarding my circulation! I feel like the Nifedipine I was taking was helping more. But that being said, the improvement was still very minimal. And with the side effects being as horrible as they are on Nifedipine, I’m not sure if I want to take it!
But then part of me wants to go back on it after I’ve had this round of Iloprost. Just to see if I can delay my blood vessels narrowing and the need for another round of Iloprost so quickly again. It’s my last bit of hope! If this doesn’t work, the only option I’m left with is monthly Iloprost. Something I reeeeallyyy don’t want!
Prednisolone
On top of everything, my nurse is very eager for me to get my Prednisolone down to 5mg! She is hoping with the help of my increased dose of Methotrexate, and reducing by 0.5mg at time, I’ll be able to do it. The higher dose of Methotrexate should make my body a bit stronger to deal with the steroid drop, and prevent a flare up happening as easily.
As you can imagine, I’m very anxious about doing it! I wasn’t well last time, and worried I will be the same this time!
That’s it from me this week!
Until next time,
Goodbye for now
Emma
xox
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Want to catch up on my previous blogs, head to: My Weekly Lupus Diary
