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.

Tuesday, 10 September 2013

Changes...

I've recently started using some physio techniques with the emphasis on clearing the stubborn mucus that has been blighting my life for a while now. Because I have been getting the same infection on and off for over a year, we are now starting to worry that there has been some lasting damage, not just to my lungs but some of my other organs as well (antibiotics and other medicines can be tough on the kidneys, liver and prednisolone can be murder on the stomach). Its been rough on my body and we need to know if there has been any lasting damage done. I'm hoping that if there has been any damage, it is something that can easily be put right and I can kind of reverse the clock back to how I was this time last year. The thing I have to keep in mind though is that there may not be much more we can do.

One thing I started doing was Active Cycle Breathing. It takes a while to get the knack of it, but I have managed to do a session of it every day since leaving hospital. Its backed up with a session of Flutter and then more active breathing. before I can cough and get the nasty secretions off my chest. The whole session takes me about 15-20 minutes and I have to do it 3/4 times a day along with saline nebs and normal treatments. My medical treatments take a lot of work and they're very time consuming and exhaustive. It is worth it though because once I've had a good 15 minute session, I can cough a bit and move the stuff out of my bronchial tubes, which does result in me breathing easier and a lot more comfortably. so it's no wonder that I can't really get the energy to do anything and it makes me feel a bit down at times.

I have also started using a "Flutter" device. This consists of a high density steel ball and cone assembly that when blown in to, produces a low frequency vibration (or fluttering sound) that helps me to break up, loosen and effectively remove stubborn ick from my chest. Since using it, I have managed to clear my chest of some of the muck and I have had much better and clearer breathing, something that for me is something of a rarity but it's OK. I have to blow in to it at several speeds a few times a day. Once it's done I have to "huff" for a few minutes but I have never felt so clear and my breathing hasn't been this good for a while. I did have a bit of hassle getting my flutter device, they're not something that is regularly prescribed and as a result the local pharmacy doesn't have them readily available. So once I got my prescription filled, we had to actually ask around the suppliers for Lloyds for it! It was kind of funny and when it arrived, everyone was intrigued by it and they asked to let them know how I get on with it. I like the people at the pharmacy in town because they treat you as a person as opposed to a number on a screen or piece of paper, I always go to the same one so they know me pretty well these days and when I go in, staff always come over to ask how I am and talk to me. Its nice to be treated like that.

I hate feeling low and sometimes my condition makes me feel like I am drowning in either the muck that I am bringing up or in the run of overwhelming circumstances. Regardless of what anyone thinks, a hospital can be one of the most frightening and disconcerning places I have ever had to go to. It's weird to think that I am a regular there and not at a place I can enjoy myself in. They're intimidating and everything you do is subject to scrutiny, theres mainly a lot of older people on the wards and there are the few that look down their noses at you if you're under the age of 60. There are even some patients who are so confrontational that they shout and scream at you just for being there and taking up a bed or having to have a lot more hands on care. You do get the odd really nice person but in my experience, a lot of them are rude, abrasive and general stuck up their own arses because they don't like that one person is getting more care than they do. It's actually a jealousy and attention thing but it does make you feel more stressed in a situation that is hard enough as it is, like you have to justify to THEM that you feel the way that you do, which is not the case.

Life has been about changes recently and some of them have been harder than others. One change that I am looking forward to most is that Jace and I are planning to take the plunge and live together soon. I'm really am going to enjoy being with the man I love and I feel so happy about it. The sad part is that unfortunately, due to her own reasons (which I won't discuss as I respect her right to privacy) Becky did decide to go back to her mum's today. Not because of a falling out (we're just as close as ever) or anything like that, but because she has her own set of challenges and her own journey and I respect that and will still be there when she needs me. She will still come and see how things are getting on, but she has left Redditch. After all, it was never going to be a permanent thing and we both knew and understood that. Do I miss her? Of course I do, but in order for her to get to where she needs to be in life, she needs to find her own path and not have anything to stop her from following it. As long as she is happy in life, then I am happy. Besides, living with Becky has prepared me mentally for the challenge of living with another person and now I feel ready to take on the challenge of living with Jace and I have given her a taste of life outside of the family home and she's really grown up in the time she was here. I have wonderful friends who are willing to help me out with the care side of things so not to worry, my health isn't going to plummet because I was alone for weeks on end!

Things are going well with my new carers and I am getting the care I need, despite my stubborn nature and wanting to help everyone else out. It looks like for now, I am well tended and have been curling up on the sofa in my pikachu onesie and watching cartoons, which has been quite a different change of pace for me, I'm not used having people run around after me and I have always been so independent and I think that at times, that has been my downfall because I'm so reserved and nervous of letting others help me. It's not that I deliberately push people away, I just feel wary of other people, probably because of things that happened years ago, but I am learning to slowly trust people and when I do open up, its nice. I'm learning about the right people to open up to, as opposed to some of the people I used to open up to.

Loves
Wendy xx

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