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.

Tuesday, 29 April 2014

Making a Change

It's amazing how changing one thing can change the whole feel and flow of a room. Sometimes we get so used to something that we don't even realise that we are affected by it, maybe it's because we know no other way or haven't really thought about it before. Last Friday, my new bed frame came. I had to replace my bed anyway as the thing was falling to bits and well a bounce around and messing about broke the wooden support beam and we were resorting to using a bale of animal bedding and an Argos catalogue to hold it up! Rather funny but not at all practical in the long run. So I ordered the new bed and it was delivered on Friday last week.

This meant that I was kicked out of my bedroom for a day while Natt assembled the bed, stripped the sheets and tackled some lovely black mould that had grown on the wall. It turned out, when we were looking at it, that the old bed frame, as it was ancient when I got it, was going rotten and probably had been for quite some years. The wood was damp and mouldy inside and the smell of it. I can't even begin to put in to words how bad the thing smelled, even from the beginning, but at the time, it was a generous gift from a friend and well, you don't want to look a gift horse in the mouth, but chances are, this thing had probably been going more and more mouldy over a period of 10 or so years and the spores, years of dust from use and other factors were choking my chest more than I ever realised. Not to mention the poor support the thing was giving my back. The mattress was also in desperate need of flipping (it hadn't been done in 2 years because it's not something easily done by myself.

Ironic isn't it, that my bed was a contributing factor to my illnesses and well, the damp you get in a ground floor flat just seemed to aggravate the problem further. Not going to say that my place is horrible, we just have a slight damp problem in the bedroom due to it being quite cold in there over winter, nothing a few home made rock salt dehumidifiers hasn't helped and my bedroom feels so much nicer and more of a place to relax.

I never noticed before how oppressive the bedroom used to feel. Like there was a vacuum of desolation and being miserable. All confined in one space. It didn't ever feel like I was ever in there and it became a prison rather than a haven and it made me feel trapped in the shadow of a relationship that should never have been. But now I find that the more of the furniture I had when I was in that relationship I replace, the further away from that time in my life I feel. I feel like I am literally throwing the past away and replacing it with a new and happy future. So far it seems to be working and I do feel happier and I do feel free of it all.

I just wish I could cast off my asthma as easily but unfortunately it seems that my asthma is always going to be this way. I saw the doctor on Friday (a new GP at the surgery who used to work as part of the MAU respiratory team) and she even knew about me and my case (turns out I am one of the more interesting cases out there, especially when they mention that it was because of me, certain doctors changed the way they see asthma). She looked at my peak flow diary, showing my usual wide variation of readings, often looking like some kind of relief map of the mountains, and what treatments I use and how they have an effect. Comparative readings are useful because they allow doctors to see for themselves what the medicine is doing and if it is clinically working. The worry is that I have been having near constant infections for nearly 18 months now and they have taken a toll on me. My body is tired and each time I get sick, it takes me longer to get better.

My medication list has grown over the last 6 months and I have been getting positive effects from the new medications. Admittedly I was a bit wary of morphine at first but now I justify see it as another everyday thing and despite not liking how it tastes, I am thankful for the effect it has in reducing the pain to a tolerable level. It is hard to understand how much something like this can hurt, but it can. And it does. The pain in the past has stopped me from sleeping for days, completely shut down any urge for food or drink and has even caused me to collapse once or twice. It's not anyone's idea of fun but who really opts for life on over 50 pills a day? I know I certainly didn't. Sometimes though, I am hit by my limitations and that can leave a rather nasty taste in my mouth. Simple things like going out for the day take a lot of planning and I have to carry an obscene amount of drugs, devices and other medical things as well as ensuring my chair has enough charge to last me.

Things are going to get better. But now its up to me to keep it up.

Wendy xx

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