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.

Sunday, 19 April 2015

This Isn't Defeat, It's Determination

Since my last admission, I think I was feeling a bit depressed and upset about things. After all, who wouldn't feel down and hopeless after all that? Maybe I'm working though some kind of psychology of what it means to have lung failure, either way, I am coming to terms with it all and I am still trying to do what I can. I think I just needed something to remind me of that.

As lame as it sounds, it was an anime that finally broke through my feelings. Maybe its because one of the protagonist characters is disabled, yet he still goes on, doing what he has to, achieving goals and working out what the truth really means. I relate to Edward Elric quite a lot, he lost his right arm and left leg, his brother lost his whole body and became a soul bonded to a suit of armour. Despite that, Edward went onto get automail (metal prosthetic limbs which work exactly like flesh would) fitted and joined up as a state alchemist (a military service of alchemy experts who use it as an ability, each with his/her own specialty) to pursue the means of returning his brother's body and setting the wrong things right. Fullmetal Alchemist (and the other series, Brotherhood) is one of my favourites.
In the the Brotherhood version, there's a scene that got me. Edward is slumped in a chair, too miserable to look up and his eyes seem dull and lifeless. He's visited by a couple of people who tell him what he could do. One of them comments how defeated and sad Edward's eyes look. The other says "Those aren't eyes full of defeat, there's fire in his eyes." And it kind of woke me up. It made me think. Maybe mine aren't eyes of someone whose ready to throw in the towel yet, but the eyes of someone who wants to fight, who wants to get their body back to what it was. Its a long journey but I'm not going to let that stop me. I'd have to inject antibiotics on a regular basis to achieve the best health possible for me, then I am willing to do it.

I've finished this course of Tazocin and it has been helping. I'm getting less infection-y and more just me. It's probably going to be a baseline now but I'm OK with that now. It was kind of hard to take in at the time. It isn't every day that you get that kind of news and its a natural thing to be angry, hurting and generally wanting to throw it in and just bury your head. The worst thing about it was the knowing that had they performed the tests last August, or maybe sooner, they could have helped me and I may have never got this far or this bad. That's the thing that keeps going through my head. I feel cheated, let down and I just want the "doctor" who could have helped take a step back, imagine how he would feel if it were his own daughter going through what I am now. Would they have been dismissive? 

I doubt that.

The worst thing about IVs is my veins. They are useless. Next course, I'll have a midline or PICC put in. This should last better than a normal IV cannula, these tend to block or "tissue" within about 2-3 days. Then you either push fluid in to the skin or muscle which is painful. Unfortunately, we have probably tapped most of the veins in my forearms. Absolutely covered with bruises and holes. Just more scars to add to the collection. They don't tap the legs or feet in the community, the way I tend to sit it wouldn't be best either! But still 10 cannulas in 14 days, that's painful.

Natt is moving soon, he's got a place and is going through the decoration and set up, he'll move I'm permanently when its all set up. He isn't going far and will probably be here often and making sure I'm OK. I'm not going to say too much as its not my place to publish anyone's personal information online. I bear in mind once someone's information is out there, it could cause all kind of problems for someone. Its not fair or my place to do that. When Natt does move on, we'll be sorting my living room back. Turning it back to a living area from an ad-hoc bedroom. Making it a place to spend time doing fun stuff, interacting and enjoying it. The animals will move back out (although I won't keep rabbits outside again, unless I padlock the cages shut so that little hands can't repeat what happened) and my  bedroom will be just that. A place to sleep and watch the odd DVD. 

I want to replace a fair bit of furniture. Make it all match and look nice and make sure I can use my home without causing issues with my breathing, main issue I seem to have is with dust. The other day, I needed a break from the world of chronic illness. I feel like sometimes I am behind the bars of a cage created by illness.Unfortunately this is kind of a typical way to feel when you have chronic health problems. I mean it's not impossible to go out but at the same time, it's not exactly easy. Going out takes planning. Where, when, how long? That kind of thing. I have to carry certain supplies with me and although some of them are vital, others are controlled drugs and need to be carried carefully, along with a prescription to prove that I have been prescribed them (I know it does seem odd but there are some people out there who would do anything to get a fix of some of my meds). I just want to make it my own. I've been here for 4 years this month (I know, right?) and as odd as it seems, I have had to always decorate to the style of another and myself. It'll be good to decorate the place and mark it as my own. 

It's been 4 very good years here though, despite the occasional arsehole upstairs. The flat is a comfy size and when we redecorate it'll look great, just the place for me really. The stop-gaps (which I really should have replaced sooner but you know me, I forget after a while) of flooring will be replaced. I have a new proper nebuliser in the bedroom (replaced my old one that had walked itself off the table a few times and just wouldn't nebulise anymore) and well now I am making the best of things.

Loves
Wendy xx

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