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, 19 June 2014

Stir Crazy

Its been a bit of an annoying couple of days. I'm on strong antibiotics at the moment to try and see this infection off. The problem is that I seem to always be on the same two and I am wondering if I will ever see the end of it, or am I practicing in an exercise of futility? I worry because I have not been off antibiotics since nearly 2 years ago for any period longer than 2 weeks. On top of that, I have been started on a lot of other medications, which I have been finding incredibly helpful and I am not too concerned about having to use them wisely anymore. The trick with a lot of my meds is that I have to use them at certain times or maintain a constant level of them in my system. Things like Oramorph are great because you can take them and they work pretty much straight away and last for about 4 hours.

The biggest thing that is driving me rather spare is that I want to get out. I haven't been outside since Tuesday and I am starting to go a bit stir crazy. With the "considerate" neighbour of mine who seems to like playing her music incredibly loud (it drowns out anything else), I have been wanting to go out more and more just for some peace and quiet. Being pretty much housebound isn't fun. There really isn't a lot you can do when someone's being intrusively loud and all you want is to just go to sleep and stay there. The really annoying thing is that it goes quiet around 3-4pm, just in time for the kids to come back from school, and you can't really begrudge them time to play outside after a day of being trapped in a classroom all day. I remember that I was a kid once and I too liked to play outside after school and we probably made the residents of Cull Avenue pretty miserable (in fact there was one woman who used to yell at us, especially when the boys kicked footballs at the wall).

Kids and annoying noisy people aside, my need to get out and do things is going to have to take a back seat because, if I can barely focus on anything, it is probably safe to assume that my being in control of a motorised wheelchair would not be among the wisest things to do and the last thing I would ever want is to run in to someone or run over someone's child. It's kind of a like it or like it scenario really. Even if it means that I am trying my hardest to find things to keep myself occupied, pottering around the bedroom, looking through my Yu-Gi-Oh! cards and making decks or playing on the X-Box, having rediscovered the great fun of EDF.

EDF (Earth Defense Force 2017 and 2025) is one of the funniest games I have been shown. The whole point of it sounds like a plot from a Japanese "B Movie". Earth is attacked by these aliens who have adapted to our environment as bugs. Very big bugs. So the aim of the games is to run around armed with appropriate weapons (for me that's an assault rifle for close up and a rocket launcher for far away, resulting in the bugs flying everywhere) and taking on ants and spiders which are bigger than most buildings and have a taste for human flesh. The funniest thing is when you pump 10 rockets in to a crowd of 20 bugs, they catapult out of the map which is entertaining to watch and then go and hunt them down one by one. This keeps me amused for hours, along with other games. I am a gamer and it is a good way of passing time.

I tend to play games while doing my nebs. Basically, when you have a nebuliser running, you have to sit down with it and relax. It works better that way and afterwards you feel immediately better. It tends to take 20 minutes on average to nebulise 5ml of solution (15 with my new bedroom neb). I had to replace my bedroom nebuliser because it had seen better days, taken several tumbles from the bedside table (resulting in the casing being held together by superglue) and the fact that it was about 20 years old. The motor was worn and frankly, it needed to be retired now (you can't even get the parts to it now) after I realised that it took nearly 45 minutes to do a neb and the noise it made was horrific!

I came across the new one when I was in Boots. I had gone in to get some lunch and see if they sold pulse oximeters (my one has seen better days, it was only a cheap one and it tends to say my SpO2 is 2% higher than it is when checked against the ones in the hospital) and happened to see that they stocked the Omron Comp-Air Basic nebuliser at a reasonable price. It's a tiny little compressor and it's so much quieter than my other mains powered nebuliser (a Medix AC1000, I brought it 3 years ago and it has been my workhorse) so I can use it at night without causing too much disturbance, also meaning that I am saving on batteries for my Micro-Air. Knowing it was an Omron as well meant that I knew it was going to be good. My Micro-Air has been my constant companion for nearly 5 years and it was either in my bag or in my bed. Instead now it stays in the bag on my wheelchair and I have my new machine to handle bedtimes and any middle of the night nebs.

Last night, I fell asleep with my oxygen on, and I managed to get a better nights sleep than I have in a while. I can't explain it, I was feeling awful last night and decided to leave it on for a bit to keep my chest at ease. It helped and I managed to get a good, restful sleep (I wasn't up at 4am to neb for once) and feel better for it. All things aside, I think my body is trying to tell me something about it's needs. It'll all be assessed on the 8th of July so we will know there and then just how much my oxygen has helped me. It's nice to be awake and alert and social again. When I was feeling very poorly, I just didn't want to be around people and would hide in my bedroom away from everyone and when I was out and seeing people, I would barely be able to say much and I never finished a sentence because I would forget what I was saying halfway through (more so when I was interrupted) and would trail off, my skin had a sickly grey tinge pretty much all the time and generally, I looked like I was moments away from dropping. It wasn't nice at all.

That's a thing of the past now and I am breathing so much easier and am happier as a result. Not something I ever want to take for granted again.

Wendy xx

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