Last night was anything but decent. I was coughing up stuff. To be honest, it is nothing really that strange in itself but it was more in quantity than usual. I literally felt like I was trying to cough up a lung or two and it did get (and still is) very painful so I have had to be careful today and keep up doses of pain meds and other things to make sure that this causes as little bother as possible. The problem is that I am physically and mentally worn out and just want to curl up and sleep, which is difficult when you're in pain. I'm a little worried that a ride with the men in green may be on the horizon but I'll do what I can before I let that happen. Especially as it's someone's birthday this weekend and I want to make it the happiest I can.
For life's little ups and downs.
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:
I'll flap my broken wings and erase it all someday... You'll see.
Wednesday, 29 March 2017
Last night was anything but decent. I was coughing up stuff. To be honest, it is nothing really that strange in itself but it was more in quantity than usual. I literally felt like I was trying to cough up a lung or two and it did get (and still is) very painful so I have had to be careful today and keep up doses of pain meds and other things to make sure that this causes as little bother as possible. The problem is that I am physically and mentally worn out and just want to curl up and sleep, which is difficult when you're in pain. I'm a little worried that a ride with the men in green may be on the horizon but I'll do what I can before I let that happen. Especially as it's someone's birthday this weekend and I want to make it the happiest I can.
Tuesday, 21 March 2017
Tough Week, More than likely to continue
Ever feel like you're chasing your own tail when you're trying hard to work around certain personality flaws or issues. I am very aware and I know that I suffer from OCD (Obsessive Compulsive Disorder, and NO, it isn't just an obsession with cleaning) and it manifests itself in ways that are a little bit odd for most people to understand. A part of my personal OCD (apart from the excess use of hand sanitiser) is that I am always apologising to people for everything from moving slightly (because I think that I inconvenienced them) to simply asking for help or for a drink or something (because in my mind I always think "Who are YOU to ask anything of anyone. You don't deserve help.") and its even happened as a result of calling 999 during my asthma attacks. It's a tic I've developed as a child that has never really gotten better.
It's annoying. It's frustrating. It even makes me aggressive towards myself if I try to stop it (I have been known to self harm from pinching myself to slashing my arm open with a huge knife.) and it's sometimes hard to prevent. It's like, if I don't keep apologising. I am scared of something bad happening.Usually because when I was a kid, when I didn't apologise constantly to one of my brothers I was "taught a lesson" or "disciplined" in any way that he saw fit. I don't really want to go in to the full story as I find a lot of it is hard to think of, even now after 16+ years but it left a mark on me, inside and out. Its hard to think about and its hard to even put in to words because I know that it makes some situations more likely and there are people out there who have taken advantage of this. Usually when it involves them gaining money or possessions from my vulnerability and my own generally wanting to avoid being "punished" again.
I won't go in to that now as it isn't really worth chewing over again and again, I would much rather keep on moving on with life because it's a better way around things. Besides, it annoys the people who try and make you out to be the "bad one" all the more if you keep moving with your head held high! I made an active decision nearly 6 years ago now that I would not let anyone make me a victim. I've moved on so much over the last few years and to be honest and most of that has come from when I left the old place and moved in to the bungalow and it has just gone from strength to strength since Jace moved in and our lives became shared with each other. To be honest, when I left the flat that last time, it was like closing the door on a chapter of my life and I've improved mentally since leaving it behind. I think my aim in things is to keep striving forward, learn from the mistakes (and I've made my share over my 29 years) and not repeating them. People who hurt me are out of my life for good and they aren't ever going to get back in. To put it bluntly, to let someone who made you feel that way back in to your life is like scooping a poop out of a toilet and pushing it back up your bottom! You just wouldn't do it. Or I would hope!
It isn't just the mental stuff that has given me trouble recently. I think it's just the fact that I have had a really bad infection and that I have been feeling a bit worn out by the smallest things (typical for me when I get these kinds of infections really) and it is just taking a toll on me a little. That's OK though, infections take time to heal from. I was also thrown a bit of a curveball by my review with the respiratory nurses at the hospital. To cut a long story short, we needed to work out what was happening with my oxygen levels and in a weird way redefine the clinical indications for my oxygen (it got a bit muddled as there wasn't a lot of data to go by from recent tests, actually parts of my records went missing and the nurses were using old instructions to work out what the doctors wanted, it's embarrassing that they quote one letter a year before they saw me and I had seen the consultant since then, no copies of EDS and a great deal of inaccurate information) and general breathing when I sleep. I snore. I snore terribly sometimes and I'll be honest, it is really embarrassing because it is so loud. The other problem which Jace (and other people have pointed out, but why this was never looked in to I have NO idea, think someone dropped the ball here) that I stop breathing in my sleep.
Annoying thing is that I had to ask for the study to be done just so that we had the evidence of what I have been saying for years. The study we did pointed to low oxygen levels at night and sleep apnea. I wanted this sleep study done because I wanted to put things in line and get everyone singing off the same song sheet. Now if only my CT scan from 2 years ago had more available to view than a 1 line report saying that I don't have bronchiectasis and this was all shared with Heartlands (other than copies of the test results that I brought to them) as well as the planned admission which they wanted to do 2 years ago (but haven't had a bed spare), we could be well on the way to a more effective treatment plan and a vast improvement in my quality of life. I don't want to be tethered to this and that and I would give anything to be tube free.
SA is basically where for whatever reason the airways collapse when you fall asleep and your lungs are working extra hard to supply your body with oxygen. The body does counter this in the way of making you wake up a little (often with a rather harsh snort) and the result is that you don't get enough decent sleep. Obviously this in itself has its own set of issues and not sleeping can really have a dramatic effect on your physical and mental stamina . The nurse explained that because of my lungs being as they are and now this, it's like I'm not able to charge my batteries so I'm pretty much like a laptop that can't hold a charge. So that explains why my oxygen levels take a nosedive at night and I wake up feeling like I hadn't slept, which of course exacerbates my other conditions and it becomes almost like a domino effect. Because everything feels worse when you haven't had a good night's sleep. So once the doctors decide the best plan for me, I will be starting on CPAP (continuous positive airway pressure, a type of non invasive ventilator which will involve me wearing a mask that will force my lungs to stay open). I'd be lying if I said that it wasn't bothering me but this is life changing but I have to see this as a step forward rather than a setback.
Loves
Wendy xx
Tuesday, 28 February 2017
Keeping Busy
So
where this leaves me now, well I am just doing what needs doing,
resting and keeping on top of my meds and trying to keep my asthma from
flaring up. Yesterday was awful and I am really suffering for it today
but knowing me, I will find something nostalgic to watch on YouTube,
snuggle down and carry on working on my own Terraria "Railway" idea. I
was inspired recently by the adventures of a certain blue tank engine
and well, since I started work on it, I haven't been able to put my
project down! I spent nearly an entire day crafting this out of
materials and I have to say that I am really pleased with how it turned
out. Even down to the use of marble for the face and the gold number 1. Friday, 17 February 2017
Overwhelmed
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.
Saturday, 21 January 2017
No Quick Fixes...
Right now, it is one of my lesser conditions that is causing me a bit of grief. Since I was 17, I have had a condition that a lot of women have called "PCOS" or Poly Cystic Ovary Syndrome. Basically it means that my ovaries become covered in cysts. Some of these are harmless and go away but lately, I have had a particularly bad one on my right ovary. This one seems to be aggravating my IBS (Irratable Bowel Syndrome) and as a result, I can't really face the idea of eating as it feels like rocks going through my gut. There are other issues around it as well but as you can imagine, theres only a certain degree of graphic that I think should be here. Lets just say this, I am glad for the grab bars in my bathroom or I would have nothing to grasp during particularly painful moments!
Having IBS means that of course, I have to be careful of certain foods that "trigger" the issue. Dairy seems to be the big one for me and often eating milk or dairy can result in some volatile reactions, cramping and (embarrassingly) wind. It can sometimes be so severe that I would happily eat nothing at all for a few days than have to suffer the pain of actually digesting food. This has been a bit of an issue recently and as a result I feel run down and really not well in myself. It doesn't help that my mind is giving me issues as well and I have spent the last month constantly apologising to people (mostly to Jace, even for something innocent enough like reaching over to get something or just moving slightly). It is a bad habit of mine and I think it is a part of me thinking that I did something wrong when I probably didn't. I get very upset with myself more than anything I think.
When I get run down, that's when my asthma really gives me cause for worry. I think that my general health is off colour at the moment and this worries me quite a lot as there is so much going on around me at the moment too. I kind of feel like I can't get this right and that I am unworthy of anything, my personal confidence is currently down but I am trying my best to make this better. Even if it seems hard at times. I'm trying to find positives in things even on days where I would sooner just crawl in to a hole and there are days like that when things just seem to mount up. I feel at ease now because the things that I was concerned about are sorted and things are getting better. Thats the thing about life, as many curveballs as it throws, it also throws good stuff your way too, you just have to keep your chin up and remember that you have beaten things before. You will beat them again.
Oh, and give yourself something to look forward to. For me, its the Sephiroth promo foil card that Jace helped me negotiate with a seller for. There were only 60 non-foils given out and about 20 foils so this card is rare, its beautiful and its going to enhance my deck in ways that we could only dream of! Of course this also means that I now one of each Sephiroth card currently available!
Loves
Wendy xx
Wednesday, 21 December 2016
Loose Ends.
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
Sunday, 18 December 2016
Rough Week...
My Blog List
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Quick Update12 years ago
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Gone but never forgotten14 years ago
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Unexpected Suprises16 years ago
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Acceptance10 years ago
