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 Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Type 1 Brittle Asthma, Various Allergies, Neutropenia, Chronic IBS, Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. 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.

I'll flap my broken wings and erase it all someday... You'll see.

Sunday, 30 November 2014

Empathy

OCD, what a pain in the backside! I have it and it manifests in this constant drive to clean. Before my mum came over with her partner, Dave, I was getting more and more depressed because my bedroom was getting worse and worse and I couldn't do it alone. Since then, I have worked hard to keep the bedroom clean, fresh and I antibac everything I interact with daily (things like medical equipment, my DS, tablet, PSP etc) to prevent the build up of germs on them. I understand my OCD and what I worry about (usually it's a fear of germs and getting sick) and sometimes it can be a sign of something bothering me. As it is, there are things that I can't do anything about so I do what I can with the things I can change. Sometimes I find it hard to communicate why I feel compelled to clean. Sometimes I get upset because I can't explain it. Sometimes I just want someone to look at me and rather than being rude and unpleasant about it, for them to try and see how I see the world.

I have never seen the world in the same way as anyone else. I'm not damaged or broken. I'm not wrong. I just have a borderline form of autism. As a child, I didn't make friends easily and I struggled for most of my life socially. I thought it was because I had been largely unable to socialise as a child due to bullying so knowing now what the real reason at least gives me a little solace.

It's been great living with one of my best friends and we don't argue or bother each other much. It's kind of panned out that I have one room, he has the other. I still have to go through the living room to get through to the wheelchair to go out or to the kitchen whenever I need anything but other than that, I don't really go in to the living room much. Admittedly, it does feel very cluttered in there but it's nothing anyone can do anything about. Natt will get a place eventually and when he moves out it will be a living room again but for now, it's like makeshift bedsits with a communal bathroom and kitchen kind of thing. The only real thing that bothers me about the whole thing is that the carers tend to complain to me about the living room despite me not going in there, it isn't anything to do with me at the moment and I have managed to compile myself in to my room and I do understand and respect that not everyone is going to keep to my standards of cleanliness and admittedly that can be a bit frustrating. Don't get me wrong, I love Natt to pieces and he is like another brother to me.

I have a very sensitive allergy to dust and too much dust and lack of airflow will result in me having serious asthma attacks. I have been triggered (not by my own home) by this so many times that I know the drill. I know when I start feeling the allergy creep up when my hands itch and my eyes water. In some cases, the dust has actually brought me out in a rash, like red spots that weep and get sore. And because my body doesn't know what it needs to attack and is busy attacking itself, infection easily sets in (last year it was so bad at one point that a patch starting as something the size of a 50p to all over my hip and halfway down my legs) which then bogs me down further. It has caused me not to have hair where rashes had once been but that is only a small part of it, including parts of my hair that would just fall out at random. Weird huh?

I'm on some new antibiotics as well as a new inhaler regime. Before I was only on Symbicort 200/6 twice a day and as needed, now I am on double strength Symbicort AND a separate Pulmicort inhaler which I can use to tweak the Budesonide component as required (increase and decrease by peak flow and response) without subjecting myself to too much of the Formoterol component which pushed my heart to beat too fast. Before we wondered whether the extra Formoterol was what I needed and it has been a real trial and error process. The problem is, my treatment is very complicated and when we have to make any adjustments, we have to experiment with things to find the right drug to change or eliminate anything that I was on that wasn't helping. All my meds have been tested over and we know what works and what doesn't, there are some margins we can push but it has to be done carefully. We can't just pull different things at random, that would be like playing a deadly game of Jenga. And that would only end in catastrophe.

I am just thankful that now I am getting much needed care and support to try and get at least some kind of normality back. Most people are asking for trinkets and gadgets for Christmas but there are a few of us who would just love the opportunity to get our lives back. A chance to not have to live with pain and a chance where we don't need to take countless drugs just to stay alive. There are people out there who are waiting for a new organ, a new life. So many people take that kind of thing for granted, they don't realise that sickness and disability happens to people of all ages, heck I have had people shove me out of the way in my wheelchair because they obviously decided that they had the right to do so.Those are the ignorant idiots who have no idea what it's like to not be able to get up and do what they want to. Those people make me angry because they don't even try to understand how that feels. So this festive season, if someone in a wheelchair asks you to reach something off a shelf or to move ever so slightly out of the way, or if your child is out of control and running about nearly getting hit by the chair they darted in front of, don't throw them a distainful look or make a nasty comment, try and think "how would I feel if I was treated like that because I'm in a wheelchair?" and show some respect and courtesy. Which is what Christmas is supposed to be about, right?

Loves
Wendy xx

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