Just found this on my twitter feed. It’s a really interesting and informative read. I wasn’t aware there were five different types of colitis. I had/have(?) Pancolitis.
Thank you Colitis Ninja for writing this. You can find there website here.
Tag: spoonie
Cut up some stale custard doughnuts, covered them in chocolate custard and cooked them in the oven for 20 mins at 180C. I haven’t tried it yet but I’m hoping it’s edible.
I’ve been less stiff today; I slept for a bit on the sofa last night with a hot water bottle on my stomach next to my bag and the pressure-heat combo seemed to relax my muscles. Also, my ankles aren’t as swollen today.
I’m still a little tender around the middle but I think that’s a combination of having done too much over the weekend and having a bit of trapped wind. I feel more comfortable than yesterday though so if I continue to take it easy over the next couple of days, things should improve.
Feeling a little fragile this evening. My stomach and gut feel heavy and tight but not painful. I’m also bloated from the steroids and my ankles have swollen again. I think I may have over done last weekend.
I’m getting tired but I don’t really want to go to bed felling like this. I think I’ll put a film on and lay on the sofa with my feet elevated. That’s helped before and, if I lay on my back but prop myself up a bit, it might help my stomach relax.
Check up all done
Everything went well, the nurse isn’t concerned about my tiny bump because it’s not hot or red and it isn’t painful. She said it’s to do with the mucus fistula; it’s normal to get a little bit of mucus from the back passage, so to just go to the toilet if I get the urge to.
She is also happy with how the bag is after two days (so not corroding too much, ect) and how my stoma is looking. She said there’s a little separation around it but it’s nothing to worry about because it’ll heal over time. Once I’m off the steroids, it should heal a lot faster.
Next appointment is in three weeks (they couldn’t do four) which’ll be just before the London Expo Comic Con – which I have every intention of going to – so it’s probably best I get checked before I go, just in case.
I made this for those of us in our community. Hope you like it. I truly love each and every one of you. We are warriors personified. –> Wade
Had a good day in Winchester today. Stopped off for lunch at the guildhall cafe then went for a little walk around the park before heading home. I may have overdone it a tiny bit because my stomach is a little achy and I was struggling to walk faster than a snails pace, so I’m relaxing for the rest of the day.
Things they don’t tell you about being a first time wheelchair user in highschool
Literally everyone will ask if you broke your leg(s). Everyone. Even people you don’t know. Theyll ask a lot and think you’re extremely fragile.
bruises show up within the first day of rolling around, and they can really suck
people will try to grab your chair if they think you’re struggling and it can be hard not to snap at them for it
static electricity is a huge issue. You will probably either continuously shock your leg when you’re rolling around or do what I did today and zap someone so hard as you pass that both of you nearly keel over
people will call you out as a faker if you do anything even remotely fun ever on your wheelchair. Wheelies? Obviously your legs are fine lol not like you have to go down fucking curbs /s
puddles are the worst and if there’s a curb with a puddle all around and you have some ability to walk its a better idea to just stand up and navigate the chair than to fall backwards into said puddle
weird looks from people are inevitable, especially from people who don’t like you
bus drivers will often push your chair and give you advise you don’t want to hear, even if you tell them nicely you can push yourself. Its really hard not to get mad at them for it
no wheelies in school. Though if you do it in the elevator when no one else is with you you can’t really get caught.
speaking of wheelies, always be ready to throw at least one arm behind you in case you fall. They say tuck your chin in but its easier and more reliable to throw your hands back and keep your neck up so you don’t hit the floor. Sore arms are way easier to put up with than head injuries
don’t even bother to try and roll back up curbs. You will either be there for an hour or fall backwards. I managed to do both.
90% of classrooms that aren’t special ed are not very wheelchair accessible.
people will automatically assume you’re faking something if you’re not considered dumb enough in their standards to fit in with disabled students (aka high class ableism at its finest)
people are going to give you weird looks if you don’t suddenly start sitting with the other disabled kids
standard backpacks usually dangle way too much to keep on you easily, so try to pack light
built in storage on wheelchairs cannot sufficiently carry books
don’t try to hold an umbrella. Period. Especially not with your teeth. It doesn’t work.
don’t try to give the bus driver your ticket while you’re stuck on the ramp. And speaking of, its easy to start falling down the bus ramp so be careful, and when in doubt throw on the breaks
and finally if you’re like me pray to god you don’t go nonverbal when someone is trying to push you and you don’t want them to because it is hard to get them to stop if you can’t speak
able-bodied people can and should 1000% reblog this, some of these things I’ve seen on tips about using a wheelchair but a lot of these weren’t things I’ve seen
Reblogging because these are pretty good tips for anyone who uses a wheelchair. Also, good for people who don’t use a wheelchair to take note as well because we should never assume that just because someone is in a wheelchair, it doesn’t mean they can’t do things for themselves. That’s not to say we should ignore them if they do need help, however.
A chilled day
I’ve had a good start to the bank holiday weekend; I have mostly chilled today, played a couple of games, watched some YouTube videos, but I’ve also done some washing and cleaned the kitchen a little (our kitchen is tiny so it doesn’t take very long), so I’ve been productive without over-doing it. I was going make cupcakes this afternoon but I realised we don’t have anywhere to store them so I’ll leave them to another day.
Me and my fiance are going out with his parents this evening for a meal and to see Reginald D Hunter which I’m really looking forward. Not just because I like RDH, but also because this is the sort of thing we used to do before my health took a nose-dive; it makes me feel closer to “normal”. Although, I do get the occasional pull or feeling of discomfort in what’s left of my gut if I’m stood or walking for too long, these don’t last and aren’t as common now.
Made apple puff parcels this evening. I haven’t tried them yet but they seem to have come out ok. It’s just ready-to-use puff pastry cut into squares and put into a greased cupcake tin with apple sauce in the middle, egg wash on top and cook for about 25 mins at 200C. They didn’t take very long to make at all.
What Can I Eat 