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, 15 January 2014

First Admission of 2014

I have already had my first admission of the new year and I have noticed a few things that I could really do with chasing up on. One of which is that my repeat prescription form is really out of date and has medication on there that I haven't taken in a long time, not to mention that I have been given the wrong doses. What I need to do again is what I had before where I had a typed list in a folder explaining to do with my careplan, nominated persons and other such things. It's hard to explain it all when you can't breathe properly so I think that if I could get it typed up and countersigned by my GP, that would make my life 100% easier.

I think my drastic downturn this time began long before I was ready and willing to admit to it. We've all been there haven't we? You don't feel well at all, but at the same time, you really doubt that you actually feel bad enough to need to go to A+E, you get this kind of "I've got everything under control, it's fine" and even though you think you're going to win, you know deep down, you won't but you'll do your damnedest to try and get there. Maybe it's the fear of what may happen if you admit that you feel absolutely dreadful and wonder what exactly is going to happen in that situation. Going in to hospital is stressful for anyone, but when you spend a lot of time in hospital and know most of the staff in A+E and MAU it does start to feel a bit degrading and depressing. I do try not to let it get to me, but sometimes that's easier said than done.

I was there for a few days and spent time trying my hardest to keep my oxygen saturation up. It took some time to get myself to a point where I could breathe easily without having to use the oxygen, the doctors found a shadow on my right lung, showing that there was something evil lurking and I was showing other clinical signs of pneumonia. The annoying thing about pneumonia, once you have had it, you are susceptible to it again and again. It damages your lungs and can leave them scarred and painful, as well as less able to keep the oxygen in your body. It doesn't help that my lower right lung isn't working properly anymore and could one day need to be removed. I don't want to think about that right now as it scares me. A few days of IV Meropenam, o2 and just generally being looked after in hospital, as much as I hated the whole thing and basically did everything I could on Monday to get out of there, it did help me and I am feeling as though I may actually recover from this a bit better than usual. I'll be on antibiotics for a week but at least I am still alive.

I think that sometimes the hardest thing to get in to balance is between the obsessive thinking about nothing but your condition and only focusing on that, and the opposite to that, being totally apathetic and disinterested in your condition. Neither are good attitudes to have and they can be as destructive as each other. A condition can knock the stuffing clean out of you, There is no doubt about that. But if you let it control you, you forget to live in the parameters of your life, you forget to be. I don't like to admit when I have a problem with my asthma because it makes it feel too real, so I could do with learning to become a little more focused on what is really going on here. I hate it, but I do have to accept that this is my life, I have just over half of my lungs working due to scarring and asthma that is persistent and refuses to leave me alone. Conclusion here is that this is my life, but I don't have to sit here and feel sorry for myself.

So I don't.

Even if I have to use my scooter, I still go out and show my face bravely in town. I long since stopped caring about anyone making judgmental comments or glaring at me. If they don't like how I have to live my life, that's not my problem. I don't see anyone as a threat to me anymore. Heck I can sit, poised and putting on my lip balm and anyone could walk past and to be honest I wouldn't care. In fact, I'm through with being fearful of others. I don't care about anyone who wants to intimidate me, and why should I?
One thing I have been focusing on recently is changing bad habits. Anything from stupid spending habits to not letting things get on top of me. The biggest one and the most successful has been making sure that at the end of the week, there is always a little bit of cash that can be accessed easily. I have a jar that I save all the coins in after going out. I only empty that once a week to see how much is there, I won't spend that cash unless it is a life or death "Oh my God the world is about to end now" emergency. I also have some notes stored in a DVD case (not going to say which for obvious reasons) for the same reason. I know exactly how much is in each stash and its nice to have that to fall back on if something happened, and it does happen. The other side of this is paying off what I owe to other people and once its all paid, I won't borrow again. Borrowing money is a double edged sword.You borrow money to make it through, yet you can't always afford repayments.

The one thing I have put a stop to completely is selling my possessions just to make ends meet or pay for everyone else. My money is my money and theirs is theirs. Once they run out, that isn't my concern and nothing will make me relent there. I hated selling my stuff because it made me feel like crap, everything I had worked hard for previously and some things that held sentimental value disappearing because of a tight spot financially. It's a false economy really because you only get less than half of what you paid in the first place and not to mention how embarrassing it feels to have to go in to a shop and give them your possessions because you messed up so much that you have to. I want to avoid that situation at all costs and changing my spending habits has been a huge part of that because I don't have to sell things anymore.

I do try and get myself a treat every pay day. Be it a game, a couple of blu-rays or DVDs or even some nice stationary. It always feels nice when you go in to a shop and buy something. Today, my treats to myself were a blu-rays of films I enjoy (including the old favourites The Lion King and Transformers the Movie) and a HDMI splitter. The problem I have right now is I only have 2 HDMI ports on my TV and 3 things that output that way. I could sit there and swap the cable around between the consoles but that would get tiresome in time. Normally when I want to game, I want to just turn on a game and play, not fiddle around with cables behind the TV to plug in either my X-Box or Playstation. I could do one through AV, but it kind of takes away from the point a little. Not using the HD capabilities in the machines to their maximum potential is like getting a really expensive sports car to drive at 20mph all the time. I love both consoles and it gives me that well needed escape from the world around me, even if it is for a couple of hours or so. I won't rush out just yet for a PS4 or X-Box One because I am too happy with that machines I have. After all, you can only ever play one at a time!

I guess the main thing I do with my time is make the most of what I have, rather than sit around lamenting the past or what I wanted for myself. Sometimes things don't work out the way we want. That's alright though, because there is no situation I have been in that I haven't been able to work it to my advantage and do what I can to make sure my way of life is at least sustainable and comfortable and it works for me.

Wendy xx

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