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, 29 March 2017

I think that if you have a long term health issue, you are going to have days where you just want to dive under the covers and not move. Even with my efforts to remain positive and pragmatic about things, when I have a rubbish day due to pain or my asthma being difficult, I do have the urge to curl up, turn off everything and just try and muddle through. The thing no one ever warns you about is that sometimes things aren't going to go the way you want to them to and there are times when you will feel the sting. 

Today was one of those I think. I woke up feeling out of sorts and it never really got much better as the day went on. I've been feeling like crap while fighting this fungal infection and it's been one of the hardest to kick off. I'm on my last couple of weeks of itraconazole and I'm hoping that this feeling I've got is like the infection's last stand before it leaves. It had started to affect other parts of my body as well which was not nice at all, I'm pretty sure that the worst parts of the skin are now scarred and it took a while to flush my waterworks (although giving up regularly drinking fizzy drinks has helped, a lot with that and my Crohns hasn't been so painful either so that's good) but it's not going to win this one. 

I recently gave up on fizzy as I noticed how expensive a habit it was and how much of a waste of money it was too. When I moved in to my bungalow, that new year I had resolved to cut energy drinks from my diet completely, after all, they are really bad for you and all the caffeine was probably part of the sleep problems I have. I'll admit that the withdrawals from it were tough and I had headaches for a few weeks. There were times when I wanted to say "Sod it" and to and buy a crate but I'm glad I didn't. And now I'm not even drinking things like Coke or other fizzy pop on a regular basis, I'm noticing a few things. My teeth look better and I'm much less jittery, my stomach isn't full of gas so I'm not so distended around the gut and my moods are stable too (I asked a doctor about this before, they said that energy drinks can have a profound effect on certain parts of bipolar, especially manic episodes). 

I did have an interesting phone call from the oxygen nurses. Basically if you're on home oxygen they send someone in regularly to review you, make sure you're not over or under using your oxygen equipment and that what you have is fitting your needs. Home oxygen is a delicate thing because if it's mismanaged then it can actually do more harm than good. My nurse and I spoke at length about the issues at night, some of which include desaturation and sleep apnoea, which was never formally investigated and they had only had what info they could get over a year ago which wasn't even accurate as it was when a consultant was actually trying to ignore my conditions and refusing to listen to me, other consultants or nurses. Funnily enough the prat doesn't work for the trust now so we've looked in to what and why things happen the way that they have. I'm glad we did, even though it was difficult and it's brought about some life changing results but it was ultimately a huge "I told you so" moment. In fact, they now have the information and clinical indication that the stupid guy tried to cover up. It was a bit of a hollow victory though because it kind of removed any kind of doubt or deniability on everyone's part. I just hope that this will lead to something being done to help and maybe even getting a decent night's sleep for a change. 

Last night was anything but decent. I was coughing up stuff. To be honest, it is nothing really that strange in itself but it was more in quantity than usual. I literally felt like I was trying to cough up a lung or two and it did get (and still is) very painful so I have had to be careful today and keep up doses of pain meds and other things to make sure that this causes as little bother as possible. The problem is that I am physically and mentally worn out and just want to curl up and sleep, which is difficult when you're in pain. I'm a little worried that a ride with the men in green may be on the horizon but I'll do what I can before I let that happen. Especially as it's someone's​ birthday this weekend and I want to make it the happiest I can. 

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)