Loose Ends.

I finished my home IVs today and to be honest I am both glad and a little concerned. We no longer have to worry about dangling lines, sore IV sites and the eventual pain of when the vein says "nope" and shuts down entirely. The thing is, I am not magically better which is what I am struggling with, the idea that my "baseline" has changed and things aren't bouncing back the way they were. This actually terrifies me because although I know that I am not as young as I was and my body has had to deal with so much over the last 8 years, it doesn't make it any less real.

People always say things like "You're too young..." and "I've never seen someone with your conditions at your age...." and I don't find comfort in that. I don't like it when people are overly sympathetic, I think that Squall from Final Fantasy 8 said it best when he said "Sympathy is a burden I don't need." and in all honesty, I don't need it. I don't WANT it. It doesn't make things better, nor does it change the fact that things are as they are. You see a lot of what they call "catfish" (people who try and lure others in with sob-stories and try and gain sympathy/relationships/even material gain) in support groups and it makes me angry. I get annoyed because these people are so wrapped up in their own fictitious misery that they waste the perfectly good opportunities out there.  Maybe they are caught up in a kind of Munchausen's by proxy or mental health issues, I don't know, but lying about something and praying on a group of already vulnerable people is just awful.

Sympathy isn't the same as friendship.

Yes, it is nice that people show concern over me and I do see the good intentions but I often remind them that they don't have to feel bad for me. I don't feel bad for myself because I know that in some way I am making a difference somewhere. Even if it is by someone reading my blog (and I have had so many emails from people saying how they enjoy it and how it helps them) or Twitter feed.

I am not alone.

I am trying to do something positive. I publish this blog as a way of showing people that just because my body is giving me issues, doesn't mean that I am over and done with. It just means that I am more determined to keep proving myself as a person. I hate it when people who are genuinely sick have to go to great lengths sometimes to validate their lives or "prove" their conditions. It's bad enough that we have to live with it without anyone making that harder for whatever reason. I don't get why someone would want that kind of attention, personally, I hate it. I don't like people fussing over me and I like to get things done without complaining about how bad it was. If I posted on Facebook every single time I had a twinge of pain or a cough it would be the most depressing thing ever.

Instead, I try and think of good things to post about. Like the antics of the guinea pig/s (at the moment we only have one pig as Kaiba left us last week) or a project or game I am playing. I try and keep the good, positive things up because I want people to read my feed and see that there is light at the end of the tunnel and that there are things that can break through the harshness of having health problems. My advice for other people is always "don't let yourself become your condition." and it is something I do my best to keep up with myself. I have asthma, it doesn't have me. It doesn't consume my life and it isn't the only thing I think about. I don't over-analyse everything and obsess over monitoring (because that can only lead to paranoia and hypochondria). I try and enjoy my hobbies and post about those.

Right now, our latest thing has been the Final Fantasy TCG. Jace has a deck based on the Final Fantasy X set and I have Final Fantasy VII (of course). Right now I am working on different variants of the VII deck (Starter, Classic, Remake, Crisis and Advent) which will grow in time as more cards are released. I did however treat myself to a Final Fantasy VII Advent Children playmat and sleeve set which look absolutely incredible! Typical high quality as well that you would expect from Square Enix and the sleeves are amazing as well.

Sleeves on decks whether it be Yu-Gi-Oh! or Final Fantasy are important as you are handling the cards, shuffling them (and if you're brave enough to let others shuffle as well) and generally potentially leaving your cards (some of which can be worth staggering amounts of money e.g Legend Dissidia Sephiroth in holofoil can fetch up to £50 on eBay, I was lucky really with that one, I pulled a non foil and got a foil for a bit cheaper as the seller didn't realise what they were selling) to become bent, ragged and completely wrecked. Its a shame when you see a deck that has been completely ragged half to death by it's owner and the cards are so beaten up that they are coming apart, literally. Especially when you see how beautiful they once were. Obviously I keep all my cards sleeved (each deck has a sleeve set so theres no way of "marking cards or rigging what comes out) because I want to take care of them. I want them to last longer and I want people to see them when they are antiques and say "wow, look at the care these have been given."

Maybe it's because I was raised to appreciate things. When something broke when I was a kid, we didn't automatically get a new one. We had to repair what we had and treat things with care and respect. I think that a lot of our "throwaway" culture has come from kids being spoilt and things being automatically replaced once they were broken by rough handling or improper use. We don't just do it with toys or other things either, it seems that people even do it with living creatures as well. I could go on about it but at the end of the day, what will that do? I guess I want to inspire people to respect the things they have and, especially at this time of year, the people/pets in their lives because you can't just replace them that easily.

Loves
Wendy xx

Rough Week...

Treatment for certain conditions can be confusing. Heck, I find my asthma as confusing as anything else and its weird, not even the doctors or nurses really understand it and why its being so difficult. Basically for years it has been bounced around more times than a rubber bouncy ball between different doctors, nurses, hospitals and everywhere else in between. 

Since October, there has been a bit of a spike in my usage and that in itself could a sign of things being out of whack and something that needs desperately looking in to. Why are things so much more difficult at the moment? I have no idea, I have constant infections near enough and I am struggling with things like getting up and going for a pee (yes, going for a pee is actually quite physical apparently) or even eating/drinking.

When I was started with o2, I was given it to use as I was generally going around and doing my thing. Up to 16 hours per day and not at night. Then several admissions and several different people saying different things later they then said that I as probably benefiting from it overnight but, as usual another person disagrees and it all goes up in the air again (excuse the pun) and as usual the respiratory nurses leave everyone baffled. Lather, rince, repeat. The one thing that has come of all the confusion is that we finally are getting the sleep study done by the local hospital. I'm not 100% sure on how this will go but if we can get concrete evidence then that's our lives made easier.

At the moment though I'm pretty much in quarrentine as I'm on home IVs. Basically no going out and limiting people coming in, not because of what I could give but because of what I could catch, especially with an open IV line (basically direct access to my bloodstream) and the impact that could have on me. It hasn't been plain sailing either due to my twitchy veins and the fact that I am just so tired as well (apparently getting up at 4 in the morning to neb and clear rubbish off my chest is becoming a norm for us). Jace has been wonderfully patient as always and he has been helping so much with the management of my illnesses and keeping my spirits up as well. 

We lost one of our pigs this week as well which was sad really. Kaiba had a number of health complications himself and had developed an eye ulcer which his poor little body just couldn't fight anymore. It was heartbreaking as he fought as hard as he could to get through it but unfortunately, he passed away knowing he was loved and that in doing so, the pain would be over and he would be free. Unfortunately that has left us with a guinea pig shaped hole to fill and Yugi needs a new friend, something we will be sorting out after Christmas. Until then he has been lapping up extra attention and fuss as well as being given plenty of things to nibble and enjoy. He is a good little pig really, he just needs some company as guinea pigs are social animals by nature. It's never easy when you lose a pet, this is the first one we've lost since moving here but I think that deep down, it was the best thing for Kaiba as he was going to lose that eye and would have never survived afterwards.

I guess that other than Jace and I getting in to a new game, there hasn't really been much going on here. I will write a bit more on the new game we discovered, the Final Fantasy Opus TCG game (the cards... just wow....) but for now, I think I shall leave it here and see where the next week takes us. 

Loves

Wendy xx

Birthday, Family and Other Stuff

Hard to think but the girl who doctors didn't think would see 25 is still here and recently turned 29! OK so I have to use a lot of equipment these days and I spend time trying not to cough myself stupid (easier said than done at times) but I am here. I am still surviving and I am still strong enough in myself to keep moving forwards. I think that the last year or so has been a bit harder than we anticipated but the best thing to have come from it all is that finally after us wanting to get this together, Jace and I are finally working as a unit. Its been great to have someone here to help me and love me even if I am sick or feverish.

I'm not exactly feeling 100% at the moment but I am happy because on Saturday last week, my mum and her partner Dave came to visit and I was finally able to introduce my mum to Jace and it went really well. Of course there is always a bit of wariness when you introduce someone to your family, wondering if they will get on and then when it happens, it was like we were already one big happy family. Its nice because knowing that my mum approves of my relationship is important of course but its good that Jace felt welcomed in as well. I have been with Jace for 4 years now and although there were tough times and distance issues, we are really thriving together now. Which is all I have ever really wanted in a relationship.

My birthday itself was wonderful really. I mean, if you can't do what you enjoy most on your birthday, when can you? We spent the day together doing things we enjoy and I was spoiled rotten really. I know a lot of people would have looked at me funny when they saw how happy I was to be given a Sephiroth card for the Final Fantasy TCG, but that meant a lot to me for the reason that it was brought by someone who knew what such a thing would be to me. It has inspired us to start playing the game and we now have the VII and X starter decks respectively. I also brought some boosters AND the special holograph card of Sephiroth (as well as pulling one from a pack, not foil but still a legendary rare card) which really felt a bit like fate, even more so when I managed to play Sephiroth as a forward in the game and was able to do well with him. The game itself is a bit weird to get used to but once you do get it, its really quite a lot of fun and well thought out. Of course we still adore our Yu-Gi-Oh! games but this is something a little different.

Another thing that was different recently was that Jace got to see first hand what happens when my asthma decides that it's had enough and serious medical attention is needed. The biggest thing with my condition is that like many brittle asthmatics, I can go from being able to live normally to practically suffocating within a moment's notice. This is scary. No, scrap that. This is terrifying. Luckily the attack began at the doctors and I was given a neb immediately, stupid Wendy didn't take her meds early that morning, rookie mistake. After 3 hours at the surgery I was then taken to the hospital and spent 8 hours in A&E before leaving (just as they were ready for me to take up my bed on a ward but I really didn't fancy staying there without my meds, it just wouldn't have been helpful for me because I was already annoyed as the GP tried to first fob us off with "oh its the weather..." when clearly there was an infection brewing, not impressed...at all.)

That was on Tuesday, now on Friday, I am doing OK I think. Jace is keeping a close eye on me and knows now that if I can barely manage 2 words with one breath then its time to get help. We have also been monitoring my peak flow measurements and general wellbeing a bit closer to try and keep things level. So far, I'm not sleeping all day which is of course a good thing but it is a good thing we have increased the quantity of salbutamol nebs per script! All in all, a kind of mixed couple of weeks and hoping that things start moving forward. I am hoping to get my Christmas cards sent out in the next few days too.

Loves
Wendy xx