I’m back with so much to talk to you about! From one epic trip around Europe to my hospital appointment with my Rheumatologist to receiving my Autumn booster. So grab a cuppa, and get comfy, as today’s blog might be a long one!
My Trip
Starting with my trip, what an epic two weeks we had, touring around Europe in our campervan, Casper. We travelled to so many different countries, hiked along some incredible trails, and visited some beautiful towns and cities. We took Casper on his first boat trip across Lake Como, climbed our first mountain in Slovenia, and travelled through the longest and deepest tunnel in the world, the Gotthard Tunnel, Switzerland.
Overall, the wolf stayed happy. He had the odd few moments with me, but it’s never going to be perfect, and that’s ok. However, the biggest challenge I had with him, was the first week when I was in Switzerland. My body felt so weak. I think my summer flare-up had left my body a lot weaker than I had realised. The first walk I did, I only managed it to the lake, and then had to turn back. It really upset me at the time as I work so hard to get my body strong and I knew normally I would be capable of so much more. But luckily, as the holiday went on, the more walking I did, the stronger my body got. Now, I feel like my body is strong as it was at the beginning of the summer!
Here are some photos from our trip:
My Hospital Appointment
On Thursday I had my Rheumatology appointment. I didn’t see my main consultant this time, as he wasn’t there. Instead, I saw one of his registers. The register I saw, is one I’ve seen plenty of times before. So she knew who I was and she is always so lovely to me. But she hasn’t seen me since I last tried reducing my steroids back in 2019. She was like what happened? She wanted me to get down from 10mg to 5mg, but it never happened!
If you have been around for long enough, you probably remember my bad days, when I was reducing my steroids by 1mg every 4 weeks. How I made it down from 10mg to 7mg. How hard the dose reduction was, how miserable it was making me. So they agreed to give me a break and left me on 7mg for a while. I was meant to get married in 2020, so they agreed to leave me on 7mg for a little longer. Then after my wedding, I was going to try and reduce them again. However, the pandemic hit and soon changed that plan. 2 years on, I’m still on 7mg!
So she’s now worried about how long I’ve been on 7mg and wants me to try and decrease my steroids by 0.5mg between now and Christmas. Then at Christmas, she has arranged another appointment to see how I am getting on. I’m reducing it by 0.5mg instead of 1mg so hopefully, I won’t feel as unwell. We also don’t know how my body is going to react. There’s a chance I’ve become steroid dependent, so I might not be able to do it. If I have, I will have to be referred to Endocrinology for extra support.
I Feel Like I Have More Support
Honestly, I am not looking forward to reducing my steroids. How it made me feel last time was awful. But this time, I feel like I have got a lot more support in place which should hopefully help. I need to have a strong, positive mindset too, otherwise, it’s not going to work. I know it’s going to be tough, but I have to think about the long-term effect it’s going to have on my body.
The plan isn’t necessarily to come off steroids altogether, even though that would be amazing. It’s to try and get them down to 5mg as apparently, that’s a safer dose to be on long-term with. But she also said, even if we can just get you down to 6mg, that’s going to be better for your body than 7mg. I guess it’s about the small wins!
Autumn Booster
Honestly, I was very anxious about getting the Autumn booster. I had heard about people feeling really quite poorly after the jab and a lot of healthy people too! So of course that caused me to worry. I was so scared it was going to flare my illness back up, after only just getting better after August.
The nurse who injected me sat and talked to me for a while, after telling her how anxious I was about getting it. She was brilliant! She explained how she felt after it. She told me to take paracetamol regularly, and drink lots of water. She said most people just feel a bit tired and have a headache. Some people have felt a bit sick too. But then when I thought about it, that’s quite an average day for me.
But honestly, I’ve been absolutely fine after having it! Yes, I have felt tired and have had a headache all weekend, but I also had a bad headache Thursday night and ended up in bed at 8 pm and that was before I even had the injection. So I don’t know if my headache and tiredness are side effects from my injections or just my illness or a bit of both. Regarding sickness, I often feel sick due to my stomach. But I haven’t noticed I have felt any more nauseous than the normal amounts I feel on an average day, so wouldn’t say the vaccine has caused that. The main thing is, I haven’t ended up really poorly from it, which was my biggest worry.
I’ve just now got to get through the next two weeks without my Methotrexate!
In Case You Weren’t Aware
For any of you who may not be aware, if you are immunocompromised, anyone living in your household is also entitled to the free flu and covid jab to help to protect you. So Alex has been just been for his today. He’s braved it and had them both together! I decided with me, it’s not wise having the two together. So my flu jab is booked in for a couple of weeks time!
That’s it from me this week. Next week I’ve got my ENT appointment were they like to stick a camera up my nose and to the back of my throat, which will be fun! I’ve also got my routine bloods, despite them taking three test tubes of bloods this week at the hospital.
Oh, and we may have just booked New York for Christmas! The question is, will we get a white Christmas and have the fairytale of New York come true? Or will it just stay as a dream?
Until next week,
Goodbye for now.
Emma
xox
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My book, How I Tamed the Wolf, Living with Lupus is available on Amazon via this link:
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