- Home nebuliser therapy (including nebulised budesonide (Pulmicort)).
- Home oxygen.
- CPAP (constant postitive airway pressure, my machine however has a setting that makes it more like BI-PAP which I may have to switch to.)
- Anti-depressants
- Anti-psychotics.
- Long term steroids
- Inhalers.
- Amniophylline.
- Pain killers (including morphine, long acting and short acting).
- Muscle relaxants (lorazepam, also makes me sleepy).
- Stomach medications and antispasmodic medication for my Crohns.
Due to a worsening condition in my spine, I am barely able to walk anymore (and when I do, I shake like crazy, I do try though) and use my chair to get around my bungalow (as well as doing my housework from it). I was diagnosed with HSP and back problems when I was in my early teens when the school noticed that my gait was a little unusual and I was struggling to run around like most kids my age or even straighten my legs properly. My back problems really started to get worse when I was 17 and then never really got completely better. The long nerve endings in my spine are basically dying out gradually and as a result I get a lot of numbness and nerve pain in my legs and lower back. I also have a confirmed curvature in my spine towards the bottom which I have probably had for most of my life but was likely worsened by an accident when I was 10 in which I was dropped on my back in a wrestling game gone wrong.
However, even with the bleak things, there are things that can always raise a smile:
- When the guinea pigs run around in circles and popcorn in to walls.
- When your guinea pig is a bigger camera whore than you are.
- Waking up to find that not only is the sheet stripped off the bed, but somehow you have removed the duvet cover.
- Walking in to doors and then spend 20 minutes lecturing the door about it getting in your way.
- Watching old cartoons from the 1990's (including the early seasons of the Simpsons).
- Drinking lots and LOTS of tea.
- Shouting at computer games (because its never our fault that we died, its the character's fault, besides you can't play Oddworld without shouting "I SAID JUMP YOU BLUE BASTARD!" at least once).
- Making loud, inappropriate noises in serious places.
- Feeding the ducks and watching a duck attack your shoes.
- Playing Rockband with 2 or more people (its noisier and more fun that way)
- Tormenting Sims 2 characters (including deleting babies and other annoying Sims).
- Classical music.
- Chasing pigeons on my wheelchair.
- Drinking coffee and writing in Caffe Nero
- American sweets.
- Japanese sweets
- The looks on the faces of most old people when they see me on my scooter.
- Playing on my organ.
- Playing guitar.
- Drawing random things.
- Pikachu.
- Sephiroth.
- Cute text messages from Jace and Becky.
- Random gaming sessions with friends.
- Long hot baths.
- Making inside jokes with people ("I AM GROOT!" "Am I tank?").
- Collecting models of Final Fantasy characters (its kind of my obsession)
- That my mobility scooter is better at retrieving sticks than any dog and my wheelchair is a liability to headphones and laptop charge cables.
- Taking things apart. Then reassembling them and improving them.
- The antics of the guinea pigs. Particularly when a youngster is throwing things around the cage because he wants to play.
- When the guinea pig decides to lick me in to submission.
- TOYS!!!! (Yeah, big kid)
- Playing Yu-Gi-Oh! with friends and collecting the cards.
- When my CPAP makes really funny noises.
- YouTuber Callum Adams and his channel "Callum's Corner."
- Drawing.
- Painting.
- Writing.
- Playing computer games.
- Films.
- TV (documentaries mainly).
- Reading.
- Cross stitch.
- Knitting.
- Music.
- Playing with my pets.
- Technology.
- TCGs
- Learn Japanese.
- Visit Japan. (both the touristy part and the traditional temples)
- Take part in a traditional tea ceremony.
- Have a book published.
- Get married.
- Learn to drive.
- Go to Florida again.
- See Linkin Park in concert again.
- See Bon Jovi in concert.
- Get a university degree.
- Meet as many of my online friends as possible.
- Learn how to do body piercings.
- Be an advocate for young people with disabilities.
- Get covered in tattoos.
- Finish all of my unfinished projects.
- Watch every single Disney film.
Write and produce a short film.Be in a band.Write a popular blog.
Things I should remember:
- Sometimes things just happen, there isn't always a rhyme or reason behind it.
- I know my condition better than anyone else, I do live with it after all.
- Considering that I live with so much going on, I am doing a pretty good job.
- Giving up is for cowards, even if it is tempting sometimes.
- The past won't hurt me now.
- I'm stronger than I ever give myself credit for.
- It's OK to feel sad, scared or lonely when you're dealing with a lot.
- Pain doesn't mean you're weak. It means that you need to listen to your body and do what you have to.
- Sometimes just laughing is the best thing to do.
- Not everything can be cured, sometimes you have to roll with the punches.
- You can't please everyone.
- People who like to publicly point out your flaws are only trying to make themselves feel better, despite it showing the world how pathetic, immature and petty they really are and that they honestly have nothing better to say or do.
- Accepting people who have hurt you back in to your life is like putting poop back in to your butt. You just don't do it.
- People with closed minds should have closed mouths, but hey, "haters gonna hate".
- Sometimes people are just ignorant and they really need you to pity them because they just don't get it.
i deal with asthma too and reading the last part, i really identified! I've cried about my asthmatic issues too! It's hard! but the positive attitude is truly what it's all about :) that and doing the best you can to avoid to the best of your ability what you can avoid that would trigger the asthma. Good luck!
ReplyDeleteHi Wendy,
ReplyDeleteLooking for an email address to contact you but I can't find one?
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