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.

Thursday 2 November 2017

On Reflections

I've been thinking about things recently. I think that around about my birthdays I tend to reflect upon everything that I've achieved in the year and the dreams that I'm either closer to or new things to look towards. I think that my 20s was dominated by being stuck pinned down, every time I would do something, I'd be left with this sadness because I'd be so drained for days after and I would wonder whether or not I'd ever be able to do it again. Would I be able to travel to see Jace again (this was before Jace moved in)? I think that being told that there was no cure or that this was as good as it got enough times and by enough doctors just got to me. I have been grieving for the woman I was 9 years ago. Maybe it's because then I had reached a turning point in myself. Yes I would make mistakes as we all undoubtedly do but I think the biggest lesson learned in all of this isn't about how not to make mistakes, that would be impossible, but how to rise above it all and I think that somehow I got the hang of that. 

I think that the important thing that has come of recent events is a new sense of self awareness and self worth that has come from finally getting things back on some kind of track. OK so it wasn't what we originally planned for and there are still plenty of things we need to get on track with or adapt to but that's happening gradually. I think that in learning to adapt to life with a CPAP will be undoubtedly challenging but once I get used to it, it will be as natural as using my nebuliser or my oxygen. I do just have to be patient and keep a positive mindset.

One thing that my machine tells me is how well my apnea is being managed on a nightly basis. I wasn't convinced at first I have to say and I was a little skeptical about it but when I looked on my progress today I was pleasantly surprised. I managed 9 hours, my mask fit perfectly AND my AHI (the measure of how many times you stop breathing every hour) was down from 27 times to just 1 time. That is an improvement and maybe once I have kicked this infection down a bit (another 2 weeks of co-amoxiclav/levo to go), maybe I will start to feel the benefit. It can be a bit annoying sometimes and having to wrestle with a mask that is strapped heavily to your face every night does wear a little thin sometimes. Although one major change has been that my depressive moods have reduced a bit and I don't feel as anxious or on edge about things.

I do wish that my asthma was as easy to control though, I seem to be relying heavily on my medications to keep my lungs from trying their hardest to close and make me feel short of breath or wheezy. I know that is kind of what the life of a brittle asthmatic is like, I was under no impression of it being any different to be honest, but the winter is usually a very tough season for me. I know that I can get through all this and keep myself going, heck I've managed it for nearly 30 years now and I will carry on getting through the little bits and pieces that pop up from time to time. Life may not be a bed of roses sometimes but its worth remembering that it isn't a pile of poop either. It's all about celebrating the little things that make it better, appreciating those little things remembering that things may not be perfect but they're not too bad either.

So, lets see what my 30s have in store for me!

Loves
Wendy xx

1 comment:



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