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.

Sunday, 7 June 2015

Sunday...bloody Sunday....

My flat is starting to look and feel how it should again. It was to sit and chat with one of my carers and he commented on how he remembered the place years ago and how it once again is filled with colour, light and space. I love the feeling of open space, it helps me feel less cabin feverish. I hate clutter. It makes a small room seem even smaller. I know that I can't just throw caution to the wind and go out on a whim. My home isn't a prison by a long shot, but it's a place I spend time as I have to do an array of treatments every day. 

One "treatment" I do is art therapy. This is either by drawing or just simply colouring in. This can be liberating as there are no rules and you can just express yourself and let the colours just run with your thoughts. I find art calming and it helps me work through my emotions rather than letting them fester and become dangerous or scary. Having mental health problems can be scary, confusing and hard to comprehend the world, especially when you struggle with communication and social situations. Being autistic doesn't mean that I'm stupid, in fact its quite the opposite, it just means that I find social interactions confusing.

I think the hard thing now is trying to lure myself from the bedroom more. Its a gradual process as I am used to being in there day and night. Making the decision to not eat meals in there and soon moving the TV and games consoles back out. I decided that ultimately I won't need a TV in the bedroom. If I want to watch something in bed, I can use my laptop, to be honest if I can just use the bedroom to sleep then that's better for me in the long run. My living room is comfortable and I can and have already proven I can nap in there if I need to. Comfort is an important thing to me.
One thing I have managed to get is a purple curtain for my back door, its similar to the black ones I gifted to Natt, same fabric, just shorter and purple. The idea being that my home is uniquely mine. I'm so used to it being me and another person so it has to be decorated to both of our tastes and even the closest of friends can have different ideas of taste. What one person likes may be completely different than what I like. For example, I like light and open spaces, Natt like darkness and closed windows. Everyone has their own tastes.

I'm liking being able to come and go as I please without worrying about waking anyone up. In the same way that tastes vary, as do peoples lives. Natt is nocturnal and does a great deal of work at night. Its how he lives naturally and it works for him. I'm more of a daytime person and don't like getting up late or having to sneak past someone sleeping to go and do my usual things like going to the shops or getting errands done. Obviously, now I am getting things done and I'm working towards what I need to. Living with Natt was a fun experience but I think it would have destroyed our friendship had we not been so close. Living with someone else can be tough because you see that person every day, you learn their habits and there are some habits that drive us mad! 

I spoke the other day with my mental health team and they have come to the same conclusion that I came to. The way I'm feeling isn't my mental health breaking down again. The problem is that my physical problems are stressing me and how I'm feeling is only natural for someone whose been given such news and they feel that the doctor should be doing more to help me with my illness and make me more comfortable rather than automatically going down the mental health route. Once a mental health diagnosis is made, it is common for a lot of doctors to try that route first. I find that frustrating because I know my body and after living with it for as long as I have, it can still be hard to get someone to listen to you, but next month is an appointment with my consultant.

This is where we start with asking the questions about transplant and whether or not that would improve my health and quality of life. People ask me what that means, for me, its simply being able to do what I want to do and achieve the stuff I try to achieve in my day. Not to have to worry about how full my oxygen cylinder is or whether my conserver is going to run out of battery again. It is all simple stuff really but it is the stuff that bothers me the most. Having to do treatments and therapies, deal with side effects like drowsiness and effects on my short term memory (lorazepam is particularly bad for that) or concentration. It will be hard to come off some of my meds (like morphine for example) but if we could get me to a state where they weren't needed and I had the right help when I needed it to come off them that would be the ultimate goal. Its a bit of a pipe-dream right now as it just isn't possible or advisable for me to stop any of my meds. We did a little MOT when I was in over Christmas and made sure what I was on was working, taking me off what wasn't and changing things around a bit, that helped a lot and as a result we managed to optimise my therapy and make it better all around. 

I just have to make the most of things for now. Enjoy the good days and weather the bad days. Just got to keep a positive attitude towards it all and keep reminding myself that this can't be a forever deal, there has to be something of a glimmer of hope, even if its going to take a lot of work. I don't mind working towards a positive and bright future. I never was opposed to working towards something I want. And I want this so much, I want my life to get better. I don't want to stay as I am because at my age, it isn't what is right for me. I am only just growing up and seeing the world around me and I want to make the most of my time. I was talking with Natt earlier and I admitted to him that I never really asked myself how I felt about being as I am. I do feel scared but I hid myself from others because maybe in my own way, I felt like I was protecting them from the harshest of realities. I mean, who wants to admit this kind of thing, especially to family and friends. 

I'm not just having problems with my lungs either. There are also problems with my stomach and IBS flaring up. I can barely eat a meal without feeling bloated and uncomfortable, kind of like stomach cramps. This means that I don't "go" for days or when I do, its not fun. Earlier I was actually having my asthma play up while I was trying to not flop from tiredness. It can be hard work when your body decides that its all going to rebel all at once and I think that was what happened. By the time I managed to neb, get back to the sofa and recoup, I was almost ready to get up again! This is just another thing I suppose.

Wendy xx

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