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, 31 October 2018

Why Self Advocacy is Vital

Suddenly it's gone cold. Personally I prefer the cooler temperatures over sweltering heat but my lungs aren't exactly 100% happy with the sudden change of temperature. Maybe it's not helped that I don't really feel that I have actually gotten better from last month's hospital admission, I started to get there then the antibiotics ended and then it's just snowballed from there. I'm not overly worried but I am taking precautions and keeping an eye on things. Should my peak flow be really low and unable to bring back up then I know what I need to (reluctantly) do. I'm just praying that it doesn't come to that because I have an awesome month coming up and need to be well enough for it!

One thing I am noticing at the moment is that there's a lot of backyard bonfires and wood burning going on. I can't really stop that as there's no real laws against it but the smoke is affecting my asthma. Smoke in any situation will usually result in me coughing and wheezing. Cigarette smoke is one of my biggest triggers. Actually, passing someone outside whose smoking has an adverse effect on me. When I lived in Abbeydale, there was a woman who used to talk to my next door neighbour while smoking and standing on my doorstep (and the ventilation duct that led straight in to my bedroom) and it would make me cough until I started speaking up. The did stop as well. I've been admitted to hospital a few times due to 2nd hand smoke so for an asthmatic, it really isn't something to take lightly. The bonfires though are all part of the annual "Guy Fawkes" tradition so again, it's nothing that can be helped but it's only until around November 5th so that's not too bad and it'll pass.

The one thing that really annoys me is when you go in to town and people stand outside the shopping centre (there's a narrow street entrance, and despite being designated no smoking, well people do it anyway) smoking, often around prams or pushchairs containing small children. I find this galling. Smoking and damaging your own health is one thing but when you smoke over your pram where your precious bundle of joy is sleeping is just awful. I almost want to go over and ask if they want their child to grow up with severe breathing problems and potentially end up like me. I don't because I have to remind myself that it's not my place to say anything. It's crazy, in a society where some parents choose not to vaccinate their child due to the possible side effects, others will choose to expose their child to toxic smoke and cause other health problems.

Trigger avoidance is actually difficult. You can control the confines of the home to an extent (my home is strictly "No Smoking" and there's notices outside to visitors. Not only because of the trigger for my asthma (and that it is just gross anyway) but also because if someone came in here smoking it could cause an explosion with the oxygen cylinders around here! Even outside exposure to cigarette smoke can trigger a bad asthma attack and it's happened more times than I care to think of. It's difficult to explain to other people but sometimes people realise the problem and stops doing it near you. You just have to speak up, be polite though. I find that saying "Excuse me, would you mind not smoking around me as I am severely asthmatic" can actually have a positive response rather than swearing and shouting at people.

Sometimes people have to be told and only you can do that. I've had to learn how to self advocate, especially in situations where you need to get through to someone and get the help you need. It's about having the courage to say "actually, that isn't right" and not accepting a lower standard of life because someone else thinks you should. It's not being "entitled" or expecting special treatment, it's about getting what you need and getting people to listen to you. Something everyone is entitled to. No one should have to accept that and it can be difficult. Some people will try and stop you but you have to keep moving forward and get where you need to.

It's about never giving up.

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)