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.

Friday, 17 February 2017

Overwhelmed

One thing I have learned through the last few years was that if there was nothing to worry about, usually they don't push for follow up. No news is often good news. I think its a bit of  a worry when something comes back from a test, especially when it is related to my respiratory health. My lungs aren't getting better, and I know all too well that there's a distinct possibility that they never will. Does this scare me? Of course, but it makes me more angry than anything. But it also makes me determined to defy the odds as I already have. The doctor was sure I would never get to 25 and here I am, still here.

I'm sometimes angry because I see all the people I went to school with, they are living their lives, be that from getting married, ticking off items off their "bucket list", travel or parenthood. I feel angry that because of this disease and the things that made that worse, I probably won't know too many of my dreams. I don't blame people for having wonderful lives, in fact to follow some of the people I grew up with and seeing them as they are now is amazing. I guess the thing was that at 29, I didn't ever expect to be constantly battling chest infections, struggling to even breathe or do every day things. I definitely didn't expect to be disabled to the point where I am practically stuck in a wheelchair and relying on oxygen and nebuliser medication. Maybe it isn't really anger, maybe its a little bit of jealousy because my life didn't pan out the way theirs did but that doesn't take away from everything I have managed to achieve in life so I suppose it balances out.

I don't see the "enhanced rate" of PIP as some kind of bonus. I don't actually WANT to have to have extra money from the government, yes it helps but it also makes me feel sad. Sad that I have to rely on this kind of thing because I can't go out and do the things I want to do. I like to work. I like to keep busy. I hate it when people tell me how "lucky" I am to get high rate disability benefits. I'm not lucky. I'm anything but. I hate it when people say "Oh well, I wish I could get as much as you get on benefits" but it only fuels the anger I feel inside. It makes me even angrier when people attempt to take advantage of me but that is a whole other kettle of fish.

So recently I had a sleep study done. This basically involved me having to sleep while wearing 2 pieces of monitoring equipment. One was to measure the respiratory output while I slept, including how much effort my body makes to breathe, air flow and whether or not my poor sleep recently is down to my lungs basically not liking to work anymore. My lung function is around 30-40% on a good day and on a bad day it is closer to 20-30%. That is scary because it doesn't hit home until you attempt to do some seemingly normal activity and then it knocks you for six. You never realise that something as basic as brushing your hair or taking a shower can be exhausting. Basically I may have to have a machine to help me breathe at night although my oxygen levels at night were also something of interest, I will find this out in March. The main thing I am concerned about is the results of a sputum culture that I had done last week. The results came back quickly (which they always told me was a bad sign) and they have called to discuss this. I feel a little wary as to what was found but in a way maybe that is a good thing because if they know the enemy, so to speak, they know the best way to fix it.

So right now I am struggling with an infection of Candida in my lungs and a heavy flu. With brittle asthma as well, this makes for a really vile cocktail in terms of how it makes you feel. I ache. I feel hot/cold. Sweaty and shivery and of course totally sapped of energy. Basically to put it in words, it feels rubbish but to be honest, at least we can get something sorted and after some help I will be back on my feet in no time at all!

Loves
Wendy xx

Its overwhelming really because there is so much already going on and I really can't stop what is happening altogether and focus on one thing, it just doesn't work that way. It's all come at once really and I feel kind of powerless to do anything about it. I know that I have to keep going and push through it but I feel like I just want to sleep for a month or so.

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