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, 6 April 2017

OK So, here's a Rant.

I think that I am still feeling a bit uncertain about things. I'm sorry but this is a bit of a rant but it needs to be said as it has been going through my mind constantly for 2 weeks now. On the one hand, I am glad now that I know what is going on and that I wasn't losing my marbles, after spending ages trying to say the same things over and over, not like I have been trying to tell people things for a while and they just couldn't be bothered or have the time to listen to me, I mean, how would I know what was going on in my body right? I don't know, maybe its because they spend so much time dealing with people who don't have genuine problems and they become jaded or maybe its hard because not even the consultants were agreeing on what was going on with me a few years ago. Thankfully the consultant who threw it all in to doubt and confusion and made everything more complicated isn't around anymore and he can't try and play a deadly game of Jenga with my health.

I am glad I stood my ground on that one as well because that was wrong and it shouldn't have been allowed to happen. Maybe it bugs me especially because it was allowed to happen and had it not then maybe things would have been different. It is a sad truth that my local NHS trust has failed me and no one knows why I slipped through the net as many times as I did. Why didn't they listen to me? Why did they ignore the data they had right there because it "didn't fit" with what they wanted it to? Someone was held accountable and things did happen as a result but thats little consolation considering now that I have to live with the consequences and no amount of "You're very young to be going through all this" or extra money from PIP will ever make that better and that's what makes me feel so angry about the whole thing. I am unlikely to be able to recover fully from all of this and the damage has been done and it can't be undone.

It's been a bit odd because even though I knew myself what was going on, to have it confirmed was like saying "I told you so.." to the teams of doctors and nurses who were making decisions about my treatment without properly investigating as to why things were the way they were, I think that was probably careless at best. At worst, they could have removed something from my already complicated regime which could have resulted in a serious situation, like when they tried stopping my ipratropium, switch me back to Seretide and try to stop nebs in total, which went really badly.  Although from that EDS, it was telling a completely different and untrue account of things, the truth had been that I had been mistreated by someone I should have been able to put my trust in and the consultant made fun of my mental health in front of a whole ward of patients and nurses. Being told that I needed a psych assessment not medical treatment.

I was glad that my psych at the time spoke up for me and said "No, she isn't going mad, she needs to have her asthma helped because its making her life hell." and another doctor took a look at me and reinstated all the meds that the other fool tried to cut.  In some ways, having what I was saying confirmed was a bit more troubling because it was like I had had to fight to get this properly looked in to and to get whatever treatment I have already and it annoys me because I shouldn't have had to. I'm not going to be one of those people who decides that they're entitled to everything when they aren't but I was being denied the basics at times. It took a long discussion with the o2 nurse to get the sleep study done (at my request) as well as me badgering the doctor for new lung function tests for 6 months before they were done (

That experience was awful and so humiliating, luckily the nurses backed me up when I complained. Luckily as well, it was only a one off, I never allowed that consultant near me ever again. I remember being so angry about how I was treated on that admission and it was like I hadn't been through enough as it was and then that happened. Maybe that's the thing I am struggling with, knowing that they were going on little to no real evidence and trying to make huge decisions about things that would really affect me and my quality of life. I think I wanted to ask "So, anything else about MY life that you think that perhaps I would like to know?" on more than one occasion, but I managed to hold my tongue. And believe me, that was hard. The lasting impact has been that I have been too frightened to go in to hospital and will push to try all at home options before throwing the towel in and giving in.

I think that demonstrating the actual, real story of what I have to contend with when it comes to my lungs may have been a huge part of this. These tests have been important to us because they have re-identified the clinical indications for my oxygen and other medicines. I did all these tests before bit the reports for the results were minimal and often ignored what was right there, no idea why that was but apparently 10 year old basic spirometry results have more bearing than a full lung function test taken in the last month, doctor logic? This has included a whole host of new tests, scans and other things that I had to do over the last year or two. I said a while back that I was willing to humour the doctors and nurses with whatever they wanted to attempt to do to/with me and work with them because lets be honest, had I not, well I don't want to think about where I would be now and what state I would have been allowed to get in to had I not been as assertive and wanting to get this straightened out once and for all.You can't spend a whole lifetime avoiding something just because its not convenient.
Unfortunately, avoidance never works for anyone. Ever. Ignoring that little niggling pain often allows it to get worse. Its better to just bite the bullet and get things checked, especially when there may be a slight chance that things could be better. OK so it could be difficult and it could be a bit final on some things when you want to still have some deniability with. I think that although I was the one who suggested it, I was the one who needed the most convincing that I wasn't mad and that things were really happening and the reality was that this disease does have an effect on pretty much every aspect of my life. Whether that be from having to plan everything down to the last moment (knowing what I need/when I need it, do I have enough oxygen on board/ how long will I be out for?) to having to sit for a moment and recover from just doing simple little things.

I don't think that I ever expected to be turning 30 (well we didn't ever really think I would get this far at some point or another) and have nearly that many meds on a repeat prescription, but that's how things panned out. As much as I hate the fact that my lungs don't play ball anymore, it isn't something I can really do much about and to be honest I have accepted that, well I had to, didn't I? I couldn't just stamp my feet and have a hissy fit over not wanting to be sick anymore because it wouldn't change that. You just learn to make the best of the situation even on the bad days. Even the days when you feel like you just want to wave a white flag and give up, and there have been a fair amount of those days, trust me.

The key thing is finding little things to make you smile. For me, its the small things like the funny "Wheee-eeeeeee!!" sound that Yugi makes when he comes up to see me or watching Loki as he binkies (a kind of weird hop that bunnies do) and of course watching Little-Red popcorn and snuggle right up to me as hes being handled, or that derp-face! There is a magic that animals have, I know it sounds corny and a bit silly but my animals are the closest thing I have to children. I have raised them, taught them right and wrong and loved them from their cutest to when they have been going through the "naughty" stages. Raising animals fills a need in my life to need and be needed by someone. They may not be humans and they only stay with us for a while but the love they give is so real and so precious. I have never lived in a home where animals haven't been a part of it and its not something I think that I could ever do. After all, an empty home is like an empty heart. I have always had a thing for small animals, particularly hamsters, guinea pigs, rabbits and even rats. I think that there is so much character and personality in them and they really are fun to get to know, and contrary to what people think, they aren't stupid either. My pets are what has kept me going when nothing else could.

Since Jace came to live with me, things have been so much easier and we are both really happy together. We have our own little bungalow in a quiet area, lots of space and a large garden. We may not have the lastest games consoles or the latest other things but we have one thing that no money could ever buy, we love each other and to be honest, that is something to keep going for in itself.

Wendy xx

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