Staithes
My Weekly Lupus Diary

My Dysfunctional Digestive System

Hope you’re all having a lovely week! Yesterday, I received some exciting news! My sister asked me to be a bridesmaid. Of course, I said yes without question. I cannot wait to be part of this incredible journey!

Last weekend, we had a fantastic time in the North York Moors, celebrating my mother-in-law’s 60th. We had a lovely 3-course meal on the famous Pullman. Such an amazing, bucket-list experience! If you ever get the opportunity, do it! We then spent the rest of the weekend battling the crazy wind in the beautiful seaside village of Staithes. I swear it’s always windy there! Every time we go, we always seem to be in some kind of storm! Never fun in a campervan!

Here’s a little photo dump of last weekend:

My Gastro Appointment

This week I had my Gastro appointment. For anyone who is new to my blogs, I suffer from a lot of Gastro issues. I struggle to eat large meals, I suffer from a lot of stomach pains, nausea, and food intolerances, and I can’t lay down flat on a night.

I have a dysfunctional digestive system caused by my Lupus/Sjogren’s. This basically means my digestive system doesn’t work as it should. Hence why I suffer so much. I also have a Hiatus Hernia and I am on a lot of medication which causes acid problems in my stomach, both don’t help matters.

My appointment with my Gastro consultant was to see how I’ve been getting on and if I have found some happy balance with the food my body can tolerate. She was very happy with my progress. I’ve learned what food I can eat, how much of certain foods my body can tolerate, and what foods I have to completely avoid. I do still have bad days where my body will flare from certain foods. When it does happen, it can leave me with bad pain and nausea for days to weeks, depending on how long the inflammation takes to heal. To help with flare-ups, she’s gone and prescribed me Famotidine to take on a night. I only take it when I am bad, and it should hopefully help with the healing.

Being On A Restrictive Diet Is Hard

It’s hard not having a properly working digestive system. It’s hard being on a restrictive diet 24/7 a day. It’s hard when you are travelling or going out for a meal with friends. It’s hard when you look at a menu and there’s only one option of food you can have.

I’ve lost a lot of enjoyment in socialising around food like I used to. Instead, I panic about what I am going to eat, if it’s going to be me ill or not afterwards, what options there going to be, if people are going to have to cater especially for me, and so on.

It’s not easy mentally or physically. But there’s nothing I can do about it, as my consultant reminded me on Wednesday. It is something that’s never going to change. I have to accept it, just like I do with everything else the wolf brings.

Esomprazole Has Been A Game-Changer!

It’s hard hearing it from my consultant. There’s nothing she can do, other than prescribe me medication to help with pain and nausea, which she already has done, and does help. One of the things she has prescribed which has been a game changer, is a high dose, 60mg of Esomeprazole a day. Without that, my stomach would be in a lot worse state. I’ve been taking that dose for almost two years now, and honestly couldn’t be without it! Not ideal to be on that high dose long term, but she told me not to worry about it. It’s about out-waying the benefits over the side effects. However, regarding the foods I can eat, I will forever be on the restrictive diet.

That’s it from me this week. I’m in two minds about getting myself over to Flamborough tonight to catch the puffins for one last time before they fly back out to sea. Last time, my camera caught a couple on my zoom lens, yet I saw none. Wonder if I will have more luck tonight?

Anyways, until next week,

Goodbye for now 🙂

Emma

xox

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