For life's little ups and downs.

A rather quirky, funny and sometimes daunting look in to the life of someone who has a lot of health problems but does their best to keep positive. Punctuated by guinea pigs, anime, superheroes, transforming robots and cross stitching.

I started this blog to tell my story, about who I am and what I do. On top of the health problems and raising awareness for those, I also use my blog as a way to help promote other causes, particularly ones which affect the most vulnerable. I live with a number of different and complex health problems but I refuse to let anything get me down. I know how it feels to be discriminated against or thrown aside. This is me. This is my life. I live it and do what I want with it. Nature sets the limitations. We set the boundaries.

About Me:

A blog about life. I live with Type 1 Brittle Asthma, Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Various Allergies, Neutropenia, Crohns Disease (my IBS was rediagnosed as Crohns), Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. I have recently also been diagnosed with Sleep Apnea (which makes me stop breathing in my sleep) I live with these conditions, but I refuse to let them keep me down and out. I still try and make the most of my days despite being so poorly and having to rely on my wheelchair, nebulisers, nearly 50 pills a day and 2l/min of oxygen and CPAP.

I'll flap my broken wings and erase it all someday... You'll see.

My Life (Updated)

There are several things in my life that make it seem less doom and gloom and more well entertaining, I thought I would make a page of these just so that when I (or anyone else) am having a really shitty day and just need to find a few little amusing things to smile about. The one thing that  have had to do in life is accept myself and the conditions I live with. I am on a fair lot of medical treatments for my illnesses, these include:
  • 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.
And that is by no means an exhaustive list. I take about 50 tablets in a day and have up to 8 sessions of nebuliser therapy as well as being on oxygen. I am not ashamed of being on any of my medications nor am I ashamed of having conditions that make them necessary. Someone once really did their best to try and make me feel ashamed of the medications and things I need to survive, pointing out my flaws as if I didn't see them myself.

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."
Outside of asthma, I have a lot of interests including:
  •  Drawing.
  • Painting.
  • Writing.
  • Playing computer games.
  • Films.
  • TV (documentaries mainly).
  • Reading.
  • Cross stitch.
  • Knitting.
  • Music.
  • Playing with my pets.
  • Technology.
  • TCGs
Things I want to do: (my "Bucket List")
  • 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.
There's probably more to add to that, but right now, I confess I am a little tired and well, I will update it as soon as I think of things.

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.

1 comment:

  1. 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!


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