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.

Wednesday, 24 June 2015

How To Survive.

I guess it's true what they say, you never quite know what the next few days will bring and in my case, I am wondering just that. I have no real worries or concerns about much, but I don't like the not knowing. That is what drives me spare and I am currently searching for ways to provide me with some kind of distraction. Not for any other reason than I feel rough and want to just curl up and sleep until its not rough anymore. Unfortunately, life never quite works the way we want it to and I still have things that need to get done before I can worry too much about anything else.

I managed to finish one of my sewing projects yesterday, was really pleased about that because it was something I saw in a magazine and just had to do. It was simple but so pretty and coupled with the word "Freedom" it became a poignant piece. Maybe it is showing my yearning for freedom myself. I do sometimes feel like I am in some kind of "cage" made by my illnesses. I don't like feeling so contained but I have to accept the limitations of my conditions as they are very real and as frustrating as it can get. they have to be accepted and taken in to account. It can be annoying and it can get really upsetting, especially when you are watching everyone you grew up with going on to have amazing jobs, families and living the lives they want to live. Its hard not to feel embittered and jealous of that. It's normal to feel as I do, I feel like I have been robbed of the chance for a normal life and it gets to me sometimes, it really does. But at the same time, I stop and put some perspective to the whole thing.

There are people out there who are, right this second, taking their last breaths, families who are experiencing loss and people being told that there is no hope of them ever getting better. I am not the first person to go through this and unless a magic cure is found, I don't ever think I will be the last. I am not in the worst health ever and there are so many more out there whose problems would make mine look almost non-existent. You just have to get a grip sometimes and remind yourself that:

1. You ARE still alive.
2. Make each day count. Every today was a tomorrow that you were never guaranteed to see.
3. There are no guarantees except that one day, your life will end and you will die. What you do between birth and death is your choice and you can make your life a happy one or a miserable one. No one else can make that choice, even if they seem to, ultimately it is up to you to decide what you do.
4. The "System" or the "The universe" or whatever you think is out to get you doesn't just pick on one person all the time. We are all equal and we all have the same chances as everyone else. It is usually down to how you look at things.
5. Not everything goes the way we want it to. Even if you try hard, you can still wind up in a bad situation if you make the wrong choices, its best to work out what went wrong, put it right if you can. If not then just walk away and not pick at things. Whatever happened in the past was just that, the past and no amount of picking the bones will change things. 

Some people use the phrase "I'm only being realistic" or something to that effect to justify their negative thinking and their lack of motivation to change things. It was Natt who told me to stop looking at that way of thinking and be rational. When people try and disguise negativity with realistic intentions it shows that they are weak individuals who have given up. It's "realistic" to have low expections of life if you don't actually want to make things better. Then there is the people we call "comfortably depressed" who don't try and improve their situation because, hey they get more attention that way and they can't be bothered to work through and make their lives better. They don't want to so they don't have to. I personally think that if there is a chance of recovery, people should fight tooth and nail to get that. Even if it means putting in a little effort. Even if it means that one day you will be well enough to work again. Not that I would mind that so much, actually I really miss being able to earn my own money and contribute to society rather than take everything from it.

I had a good long chat with the doctor and its been nice to actually be able to talk a bit about both my physical and mental state. After a mental breakdown several years ago (and I still have the journals from there which detail A LOT of things that happened), I did some intensive therapy and its good that I finally got to the end of it. The hard part was convincing myself that the worst was over. I still remember that day, I don't think I will ever forget, that I dragged a serrated freezer saw across my arm and watched as it bled profusely in to the kitchen sink. Looking at the scar now, I still remember having it sewn up and crying my eyes out to the doctor, not because of pain but because of how I felt. I remember how it felt to do such a thing and how much of a release it gave me. I have battled on and off with self harm and depression from a young age and there have been times when I have been so very tempted to do it. The scars on my arms remind me of one simple fact though. I didn't do it because I wanted to die. I self harmed because I wanted to survive. I wanted to release the "pressure" and pain in a more effective way than screaming. I am trying to stay "clean" from it because I know I can do it. I know that I have people to believe in me.

I also had my chest reviewed as well. The doctor was worried as there isn't much air movement particularly on the lower lobes of both sides. Its hard to tell exactly what we have going on down there but we know that we seriously need to attack it aggressively and keep at it until we get some kind of result. The problem lies in that my condition is very complicated at the best of times so we are having some problems in trying to get it to get better. Luckily with my Heartlands appointment around the corner, we can get some kind of resolution. The doctor also said that I should increase my oxygen a little bit (which I am not that keen on) just while I am getting over this infection and try and go back to 2l when I feel better, and if I get worse, then go to hospital, even if I have to insist on not going to the Alex. Looks like a few days of rest may be wise for me, and staying indoors where its warm and comfortable. I will beat this thing because that is what I do. It's what I always do.

I'm not a victim. I am a survivor. 

Wendy xx

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