On my way into work. Feeling a little fragile but I think I’ll be ok. @cutiespoonies
My stomach has not been happy the last few days.
It’s been hurting and a little extra sensitive to most foods. I’m sticking to my gluten free diet so I’m not bloating, but the pain is still pretty bad, if occasional. I stuck with mostly fruit today but I did have some of my brownies for lunch, and I’ve just had some scrambled eggs for dinner. Might try some chocolate later, though, if I’m hungry. I need to call the hospital back at some point as well; I think it’s to try and sort out what they want to replace my azathioprine with.
I honestly think this is all to do with my coming off the steroids. I only have three more days of them then I finish the course, so it could be that which is causing my gut to hurt. I should have expected it really; last time I came off steroids, I almost immediately relapsed. Still, three days off work after tomorrow so I can chill and recover, at least.
What They Don’t Tell You
When they diagnose you with a Chronic Illness they tell you the symptoms, the side effects, how it can progressively get worse, what treatment is available, hell they’ll even suggest what to eat but what they don’t tell you while you’re sitting across from them is how hard the rest of your life suddenly becomes.
They don’t tell you all your favourite hobbies that required a lot of energy might as well be tossed to the side.
They don’t tell you all your life goals and dreams get jumbled up and switched around and some even need to be put on the back burners until you’ve found a way to manage your symptoms.
They don’t tell you how every day from here on out is going to be an uphill battle with two wounded legs and the weight of the world on your back. And that there will be people telling you “You don’t look sick” or “You just have to power through it” or my personal favourite “My relative has a similar disease and she runs 8 marathons a year and eats nothing but kale”.
They don’t tell you how lonely you’re going to be. Your chronic illness gets in the way of hangouts, meetings, school, your job and the only socialisation you’ll be getting is from text messages or phone calls and that’s if your friends remember you- because they haven’t seen you in so long. Or worse they’ve stopped inviting you because you “can’t come out to play” because something hurts.
I’m learning all of this on my own. I’m learning how to live with a disease I didn’t think I would in a million years have. I was completely blindsided with how much this was going to take out of me.
I’m sitting here in tears because I miss being able to get out of bed and just do things. Because my body hurts. Because I miss my friends. Because I’m starting to think they aren’t going to be my friends in the next few days, hours, or minutes.
It sucks and it hurts. I hurt physically and mentally and I just want it to all go away.
And in keeping with the theme of homemade food, I made lasagna! …I think. It’s made with gluten free sheets so it should be ok for me.
The vastly more successful gluten-free chocolate brownies. Used the same recipe as last time but with less chocolate chips.
Didn’t quite come out as planned but here is my first attempt at cheese and ham soldiers with runny boiled egg. Recipe here.
Today marks the start of week eight of taking prednisolone. I’m now down to one tablet a day. It’s sad but I can’t wait to finally be off them; as much as I love what they do for my UC, they make me bloat and are some of the worst medication I have ever had to take. Fingers crossed, I’ll be trying something new in place of azathioprine soon which’ll hopefully do the same as the steroids, just without the weird side effects, please.
I need this in my life… and in my mouth. Might try a gluten-free version if I can.
Day six of work this week is finally over! I’m absolutely exhausted; all I want to do is go home and curl up on the sofa for a few hours before bed. I don’t know what to eat for dinner though… I should probably sort that out before getting too comfy.
Thank goodness I’m off work until Wednesday.
So tired…
But still had a good day. I’m working again tomorrow, which’ll be the sixth day in a row. At least I have two days off to recover after.
What Can I Eat 