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.
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.
Wednesday, 9 December 2015
One of the ways that I keep myself busy (because keeping busy can really help keep depression at bay) is by doing handicrafts. There's something about making things with my hands, a needle and thread that makes me feel a sense of "Yeah. I did that and I am so proud right now." and the most enjoyable thing I have ever found was my cross-stitching. I have been a cross-stitcher for over 10 years and I still have the first ever thing I ever cross-stitched. I did this back in high school with the guidance of my friend George's mum and she helped me get in to and enjoy the process. I remember drawing it on a piece of squared paper and then working on the sewing for hours. To still have this reminds me of the fact that I have been doing this for so long and when I look at it now compared to some of the more recent projects, its kind of like "Wow... I have come a long way on this."
My most recent project has been really fun. I have wanted to cross stitch a Sephiroth image for a long time and I did try once upon a time (but I couldn't finish it due to stuff in the background) and I lost heart for a while I think. Then I found a piece of software called "CStitch 9" which means that I can convert any picture in to a pattern for my cross stitching pleasure. Theres going to be over 13,000 individual stitches worked by hand. I am proud of my work so far, this was my progress a few days ago, I have since worked more on the collar, hair and am working on the chest today. I work on it whenever I get some time spare (which is something I seem to have in spades and when the piece is finished, I want to put all the pictures taken of the progress all in one picture so I can see how it grew and have it compared to the original Nomura drawing. I don't want to know how many hours I have done on this as yet but it has helped keep me at least focused because I am really not doing as well as I could be physically.
It's mainly been issues with pain and my asthma being troublesome. Not helped that I have had a vicious chest infection recently as well which has meant that I have had all the stuff that comes along with that (fever, pain, feeling like an elephant has sat on me). Just what you need when you're trying to orchestrate something big like moving. I will be moving in the next week or so (not going to say where publicly for obvious reasons) to my new adapted bungalow.
I want to be clear about the reason I am leaving my flat. It comes down to my health deteriorating as much as it has over the last 2 years or so due to my asthma getting worse and my lungs becoming as they are now. Being on oxygen has been a brilliant change in me (before I was barely awake, greyish and couldn't speak more than a few words and walking to and from the toilet was like running a marathon for me) but its not stopped the inevitable truth that I am no longer able to use my flat as I used to. Its kind of sad because I have been here for nearly 5 years and this place has been my place of safety when I felt scared or the place I came back to. Its going to be a big change but one I can be sure is right for me. In my new place, I am going to have more access to the living room, kitchen and I will have a "wet room" so that I can have a shower and not have to rely as much on carers or other people. I will still require care, we know this, but if we can get it so that I needed less, I would be happy about that and it would be easier on the agency as well.
The hard part of this has been convincing myself that this flat is not going to be my home anymore. I am so used to it and heck I know all the little quirks and other things that came with it like the back of my hands. I will miss some things about the place and I will miss some of the people I got to know around here but it is all for the best reasons that I move and have a better chance at a better life somewhere else. It's OK to feel apprehensive though as I will have to learn new ways around things and where the new local shops, bus stops and other things are. It's close to where I used to live before so I am sure that I will get my bearings soon enough! Maybe a new year and a new start would be just the push I need?