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.

Wednesday, 21 May 2014

Life as Normal.

I'm starting to adapt to life on the tank and it's becoming just another part of my day. I get up, check everything is hunky-dory (SpO2, Peak Flow and things like that), and then I hook myself up. The thing I was worried the most about was changing my tanks. Turns out that is really easy, I just have to take out one can, keep that running (keep the oxygen flowing) until the next is secured in the bag, then, I just have to simply swap the line leading in to the conserver, clamp it and turn on the supply. Then I am ready for my neb, tablets and to start my day. Sounds kind of complicated, but I think I am getting used to it. It's just one more accessory I have to wear!

Admittedly it hasn't been an amazing miracle cure. I am still getting out of breath and wheezy. I still can't really do too much without wearing myself out. Although, I am hoping that these respiratory symptoms I am having are just down to the cold I picked up, not another infection taking hold after being off antibiotics for a week. It could be viral, I pick up these things all the time due to a lowered immune response (a consequence of steroids and other medications as well as a natural "infective phenotype" meaning that I am genetically more prone to chest infections, something that I have always had trouble with since childhood) and they can quickly escalate from a cough to full blown pneumonia within a few days. I am vulnerable to some things, more so than others.It is just the way things are.

I do like to try and get outside as much as possible, I mean, what is the point in having a portable oxygen supply when all I am doing is staying in one place. Besides, I like to make sure everything is as up to date, paid and sorted as possible. Nothing bugs me worse than knowing that something is outstanding and that I will have to sort that out eventually, that's why I try and keep on top of things. That and it's much easier when something does decide to give up the ghost (like my nebuliser, bloody thing!) and need to be replaced. As for the nebuliser trouble, I am making the best around that by using the machines I have (my Medix in the living room and the Omron in the bedroom) and luckily I have been able to get on with things.

Worst case scenario, I would hook up my nebuliser kit to one of my oxygen cylinders and do it that way. But for now the procedure is keeping my nasal cannula on, (set to 2l/min through a conserver) and putting my nebuliser over the top. It looks daft but its how we do it when I am in hospital so if it's good enough to do there, it's more than good enough for me to do at home. I am still getting used to taking the cannula off when I go to sleep. During the day, I do often have a nap but sometimes it kind of just happens so I forget to take my cannula off! Although earlier when I did take it off, I had de-saturated in my sleep down to 93% (my target sats are 94-98%) and my lungs were less than content about it, but I am not on the oxygen for 24/7 and to be honest I wouldn't want that right now.

I am amazed though, since getting it, I have been so much more alert and aware of where I am and what's going on. I have managed to play on the X-Box and PS3 again without feeling dizzy or nauseous and I have had the focus to enjoy my games. Last night I was playing an old favourite of mine and Natt's. A game called "Earth Defense Force 2017" (I brought Natt the new EDF game recently as a "get well soon" and Easter present), the aim of the game is to run around and shoot at giant ants and spiders which attack by either spitting acid at you or webs or just try and eat you. It's a simple game and one that when we play it, we end up having a lot of fun with it. Plus there is something satisfying about standing some distance away and shooting 10 rockets at once and watching the enemy ants fly off screen somewhere. It was good to have my reactions back and be able to just play and enjoy myself.

I also saw someone in town today and they commented on just how much better I looked, even with the oxygen cannula on. There is colour in my cheeks, light in my eyes and I can talk without having to take so many breaths between words. I'm trying to wriggle around the house a bit more too so that is a good sign as I don't feel anywhere near as apathetic. It feels amazing to be back and to be me again and I can't believe it ever got to that stage without me knowing! I think it must have been a steady decline because I was fine one moment, coughing, wheezing and unable to do anything for myself the next! I never EVER want to get that bad again.

Wendy xx

No comments:

Post a Comment

Thanks for your comment. I will review it as soon as possible!


ABG (2) acceptance (5) Adventures (1) Alphonse (2) Ambulances (5) Amusement (1) Angry (3) Animals (2) Another Day In Midgar (2) Appointment (1) Art (4) Asthma (22) Asthma Attack (12) Asthma UK (2) Awareness (2) Bad Attitudes (1) Bass (1) Benefits (3) Birthdays (3) Blogs (2) Blood Pressure (1) Books (1) Bucket List (1) Busy Day (2) Calming (1) Catherine (2) Childhood (2) Chocobo (1) Christmas (4) Cleaning (2) Close Calls (1) cold (1) Comforter (1) Compensation (2) Creativity (1) Cruelty (1) Custody (1) Cute (1) death (3) Debt (2) Depression (4) Design (1) diary (1) Disability (1) Disgust (1) Disney (1) Distraction (2) Doctors (4) documentary (1) Dr Pike (1) Dreams (1) Drugs (1) DWP (1) Dye (1) Eating Patterns (1) ESA (1) Exhaustion (3) fair share (1) family (1) Films (1) Final Fantasy 7 (5) Flu (2) Fluid (1) Food (1) Friends (7) Gaming (2) Gizmo (2) glass half full (3) goodbye (1) GP (5) guidelines (1) Guiniea Pigs (6) Guitar (1) Hair (1) happiness (6) haters (1) Help (1) HND (2) home (3) home use (1) Honesty (3) Hope (4) Hospitals (8) Housework (1) Human Nature (1) Illness (5) Infection (5) inspiration (1) Instincts (1) Joke (1) JP (2) Judy (1) Labas (1) Life (2) lost cause (1) love (1) Luke (1) Lungs (3) Lush (1) Me (2) Medication (7) Memories (1) Mike (1) Mind (1) MSN (1) Music (6) My Past (1) Nathaniel (1) Nebuliser (8) Needles (1) neglect (2) Neighbor (2) new look (2) New year (1) NHS (2) Noise (5) Omen Shadow (2) One day's supply (1) Organ Donation (1) Pain (3) Patch (1) PDSA (1) Poem (1) Positivity (1) Pred (3) quotes (1) Rachael Wakefield (1) Rachy (1) Random ideas (1) Rant (1) Recovery (7) reinvention (2) Reporting (1) Routines (1) sad (1) salmonella (1) scared (1) Sean (1) Selfishness (1) Sephiroth (4) Sephy (3) Simon's Cat (1) Sims 2 (1) Sleep (6) Sorting it Out (1) Spite (1) Steve (1) Store Room (1) success (1) Support (2) Survival (4) Tattoos (1) tears (1) Technology (1) Temparature (1) Thank You (4) The Crow (1) Therapy (1) Thoughts (1) Thrash (1) Tired (1) Toys (1) Transformers (1) Transplant (1) Veins (1) Vomiting (1) warnings (1) West Midlands Ambulance Service (2) winter (1) work (1) Year (1)