Tag: ulcerative colitis

Halloween!

So, I didn’t do anything special for Halloween but I did go out for a meal with my wonderful fiance where we decided to go and see Dr Strange. It is a really good film, so if you haven’t seen it yet, go watch!

In other news, my side is hurting again even though I’ve stayed mostly gluten-free today (I had a tiny bit this evening in the form of a mini egg-custard tart and couple of oreo biscuits). I know I shouldn’t have eaten them but I have a huge weakness for egg-custard. I will do my best to be gluten-free tomorrow; I’ve got some gluten-free Genius bagels so I’ll have one of those for my lunch. I’m also having a bit more fruit at the moment but staying away from anything too acidic.

For those interested in the rats, they are both being adorable and have braved coming out of the cage fully and onto my arms/up my jumper and into the collar for a short time. I’ve learnt one of them likes chocolate but the other doesn’t, and they both like dried banana and coconut shavings as well as pork sausage. I will continue to try and get them used to being on me and rewarding them with treats like fruit as well as the occasional cheerio.

I’m at the gym, speed-walking on the treadmill. I’m not planning on doing much other than some leg weights today. I missed going last week because of my infusion but I’m not too bothered by that. I figure if I go once a week, that’s enough for now.

I was going to go to a local Halloween Fair this afternoon but by the time I get back from the gym, it won’t be worth me going because it closes at four. Still, Halloween tomorrow and me and my wonderful fiance are going Pokemon Go-ing in Portsmouth tomorrow.

I’m drinking a lot of tea recently

I know it’s the time of year where you expect to drink more hot drinks but the amount of tea I have each week has almost doubled. Not that I’m complaining (I do love my tea) but I don’t know if I’m maybe getting a little addicted. I think I was having something in the region of four cups a day when I was in Lincoln.

I’ve also found I really, really like the Arizona brand iced tea (green tea with ginseng and honey, and black & white tea are my favourites). I’m slightly addicted to them too. I’m not sure this is a good thing. My stomach doesn’t hurt when I drink them so it’s not all bad… I guess.

This week has been weird. I’m half way through my sixth week of prednisolone, taking 10mg per day, and I’m getting a dull pain in my left side which I usually associate with a flare up. Only, everything else symptom-wise is fine. The pain isn’t too bad, I’m not needing pain killers, but I am noticing it more.

It doesn’t seem to matter what I eat; I get the pain and a need to go to the bathroom shortly after each meal. I only had soup for lunch but we were a little naughty and had Chinese for dinner, which has only ever made me bloat in the past.

Ah well, hopefully, next week will be better. I go down to 5mg of prednisolone per day on Wednesday but provided the mercaptopurine is doing what it’s meant to, I shouldn’t have any/too many issues. I’ve got a follow-up appointment with my GI at the hospital in a couple of weeks so I can always discuss things with him. I am hoping to have spoken to my GP about my high heart rate by then but we’ll see. I just hope I can get an appointment with her soon.

Bun-less burgers with bacon, cheese and BBQ sauce on top and a side of potato wedges. Not the healthiest of dinners but gluten-free and just what I needed.

The pain in my side from earlier has gone and I’m feeling ok. Although I’m still nervous about coming off the steroids, I think I’ll continue to be alright if I’m careful with my food. I’m going to try and have a bit more fruit (I’ve had only the occasional satsuma since coming out of hospital last month), and I’m going to try and stick to as gluten-free a diet as I can. I’ll go back to making gluten-free brownies soon. I might also try a few gluten-free cookie recipes a go too; it’s almost Halloween so I might try some of the themed recipes I’ve seen.

Two weeks left!

So, I’m only taking 10mg of prednisolone now and I go down to 5mg next week before stopping entirely. I’m both happy and nervous about this; happy because yay, no more pred-face or weird hunger, but nervous because last time I came off them I ended up in hospital for a week. I know the mercaptopurine and the infliximab infusions are meant to essentially “take over” from the steroids once I come off them, but I can’t help but feel like they won’t be enough. I don’t want to go back on the prednisolone if I can help it but I don’t want to end up flaring again. I’m already getting a pain in my left side and when I need the bathroom, it’s kind of urgent. Also, my gut’s been quite sensitive to a lot of foods recently so I don’t really know what to do.

I’ve stuck with what I said I would eat for dinner (left over pizza, and yogurt for after) but I’ve also had some (read: loads) biscuits. Kind of regretting it because they weren’t gluten-free and I have a small food-baby now but I don’t feel as stuffed and uncomfortable as I did yesterday. I’ve only gone over my calorie count by a little bit so I don’t feel guilty. I’ll be having a small lunch again tomorrow, and if I continue like that for the rest of the week, I should start to feel quite a bit better. Gluten-free cereal, crackers and cheese, and chicken with pasta will very likely be on the menu for this week. Wish me luck!

Are you insulting your chronically ill friends?

chronicallyrebellious:

Some subtly ableist but common phrases you should avoid.

“Get better soon!”
Should be, “I hope you feel better soon, or your symptoms decrease!”

“I’m normal/healthy.”
Should be, “I am able-bodied.”

“You’re differently abled/unhealthy/not normal.”
Should be, “You’re disabled.”

“You’d feel better if you tried yoga/prayer/whatever.”
Should be, “What treatments have you tried?”

“Oh my god! What happened to you?”
Should be, “How are you doing? May I ask, why you are using mobility device/brace/cast?”

“I have headaches so I completely understand your chronic migraines.”
Should be, “I cannot understand your illness, since the worst I have ever suffered is headaches. Let me know if there is anything I can do to better understand you.”

“You should get out more.”
Should be, “May I come over sometime to share a meal with you or relax?.”

“It must be so nice not to have to work/go to school.”
Should be, “It must be difficult to not be able to have an income or continue your education. Let me know if there is any way I can help you pursue your dreams.”

“It’s so tragic that [insert media character] is disabled.”
Should be, “I’m glad to see the media is portraying a character that represents 70% of the population.”

“I would just die if I had your condition!”
Should be, “I don’t understand how you cope with your condition. Can you explain to me how you’ve accepted your disability?”

“I’ve been praying that God will heal you!”
Should be, “Would you like me to pray for your healing?”

“I wish I could take my dog everywhere with me!”
Should be, “I’m glad that you have the resources to use such a multipurpose mobility aid such as a Service Dog.”

[First thing you say to the person] “I have been praying for you! God has your health in his mind!”
Should be, “How are you? Do you need any encouragement?”

“You are such an inspiration because you are disabled and coping with it!”
Should be, any other compliment not having to do with their ability to cope with a disability.

“I’m going to push your wheelchair now.”
Should be, “Do you want me to push you now?”

“But you don’t LOOK sick!”
Should be, “All disabilities are different, do you consider yours to be an invisible illness? How does it affect you?”

“Hey, at least it’s not Cancer.”
Should be, “It must be difficult to accept such a lifelong diagnosis. Is there any way I can help you?”

Add more subtly ableist phrases or alternatives! Show people how to communicate with us without it being so awkward!

I’m trying to be good today. I’ve only had one caramel tea this morning and for lunch I had gluten-free cereal with milk and a packet of low calorie, gluten-free crisps. I know I said I shouldn’t really have crisps but I was still a little hungry after the cereal. Tonight though, I’ve got left over thin and crispy pizza and a fruit yoghurt. It takes me under my daily calorie count but given how much I’ve eaten recently, I’m sure I won’t starve.

My stomach has bloated a tiny bit but I think I’ll be ok. I’m trying to drink more today but my headache from this morning is threatening to return. I hope this afternoon goes quickly.