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.
I'll flap my broken wings and erase it all someday... You'll see.
Tuesday, 23 May 2017
Tuesday, 18 April 2017
My Mum and her Partner Dave brought this little one to me just after Christmas last year after we lost our Kaiba-mop and we had to spend time introducing him properly to Yugi and he's definitely put some weight on and is growing up well. Its only a shame that his ears will never grow out and he will always have a slightly shocked expression. He was a bit skittish at first but when I first held him, he just settled and nuzzled in to me.
I have to say that I have always liked the idea of patchwork quilts. So I am making myself one. I've got some gorgeous soft pink fleece to line the inside of it as well as ideas for some special patches that reflect life and everything that makes me tick. And butterflies. Such beautiful and amazing little creatures, the way they flutter after spending time hidden away as they develop from a caterpillar and then emerge in spectacular colour. I also love the way they feature in cultures from all around the world. One of the most beautiful in my opinion is the idea the Native American legend that if you tell a butterfly your deepest wish, they will carry it high up in to the heavens and have it granted for you. I love that.
Also today, I had a wonderful email from Healthline that once more my blog has made it in to their top asthma blogs for 2017. This always makes me feel proud because I started this when I was in such a different place emotionally (and physically) and its my readers and supporters who have kept this going for me. So THANK YOU! to everyone who reads this and everyone who follows and finds something that helps them in their own journey. Also, you should check out the other blogs too, its nice to read other people's insights in to their lives and their emotional strength is something to admire
So, that's enough from me for now hopefully things over the next few days will be a bit more positive.
Thursday, 6 April 2017
I am glad I stood my ground on that one as well because that was wrong and it shouldn't have been allowed to happen. Maybe it bugs me especially because it was allowed to happen and had it not then maybe things would have been different. It is a sad truth that my local NHS trust has failed me and no one knows why I slipped through the net as many times as I did. Why didn't they listen to me? Why did they ignore the data they had right there because it "didn't fit" with what they wanted it to? Someone was held accountable and things did happen as a result but thats little consolation considering now that I have to live with the consequences and no amount of "You're very young to be going through all this" or extra money from PIP will ever make that better and that's what makes me feel so angry about the whole thing. I am unlikely to be able to recover fully from all of this and the damage has been done and it can't be undone.
It's been a bit odd because even though I knew myself what was going on, to have it confirmed was like saying "I told you so.." to the teams of doctors and nurses who were making decisions about my treatment without properly investigating as to why things were the way they were, I think that was probably careless at best. At worst, they could have removed something from my already complicated regime which could have resulted in a serious situation, like when they tried stopping my ipratropium, switch me back to Seretide and try to stop nebs in total, which went really badly. Although from that EDS, it was telling a completely different and untrue account of things, the truth had been that I had been mistreated by someone I should have been able to put my trust in and the consultant made fun of my mental health in front of a whole ward of patients and nurses. Being told that I needed a psych assessment not medical treatment.
I was glad that my psych at the time spoke up for me and said "No, she isn't going mad, she needs to have her asthma helped because its making her life hell." and another doctor took a look at me and reinstated all the meds that the other fool tried to cut. In some ways, having what I was saying confirmed was a bit more troubling because it was like I had had to fight to get this properly looked in to and to get whatever treatment I have already and it annoys me because I shouldn't have had to. I'm not going to be one of those people who decides that they're entitled to everything when they aren't but I was being denied the basics at times. It took a long discussion with the o2 nurse to get the sleep study done (at my request) as well as me badgering the doctor for new lung function tests for 6 months before they were done (
That experience was awful and so humiliating, luckily the nurses backed me up when I complained. Luckily as well, it was only a one off, I never allowed that consultant near me ever again. I remember being so angry about how I was treated on that admission and it was like I hadn't been through enough as it was and then that happened. Maybe that's the thing I am struggling with, knowing that they were going on little to no real evidence and trying to make huge decisions about things that would really affect me and my quality of life. I think I wanted to ask "So, anything else about MY life that you think that perhaps I would like to know?" on more than one occasion, but I managed to hold my tongue. And believe me, that was hard. The lasting impact has been that I have been too frightened to go in to hospital and will push to try all at home options before throwing the towel in and giving in.
I think that demonstrating the actual, real story of what I have to contend with when it comes to my lungs may have been a huge part of this. These tests have been important to us because they have re-identified the clinical indications for my oxygen and other medicines. I did all these tests before bit the reports for the results were minimal and often ignored what was right there, no idea why that was but apparently 10 year old basic spirometry results have more bearing than a full lung function test taken in the last month, doctor logic? This has included a whole host of new tests, scans and other things that I had to do over the last year or two. I said a while back that I was willing to humour the doctors and nurses with whatever they wanted to attempt to do to/with me and work with them because lets be honest, had I not, well I don't want to think about where I would be now and what state I would have been allowed to get in to had I not been as assertive and wanting to get this straightened out once and for all.You can't spend a whole lifetime avoiding something just because its not convenient.
Unfortunately, avoidance never works for anyone. Ever. Ignoring that little niggling pain often allows it to get worse. Its better to just bite the bullet and get things checked, especially when there may be a slight chance that things could be better. OK so it could be difficult and it could be a bit final on some things when you want to still have some deniability with. I think that although I was the one who suggested it, I was the one who needed the most convincing that I wasn't mad and that things were really happening and the reality was that this disease does have an effect on pretty much every aspect of my life. Whether that be from having to plan everything down to the last moment (knowing what I need/when I need it, do I have enough oxygen on board/ how long will I be out for?) to having to sit for a moment and recover from just doing simple little things.
I don't think that I ever expected to be turning 30 (well we didn't ever really think I would get this far at some point or another) and have nearly that many meds on a repeat prescription, but that's how things panned out. As much as I hate the fact that my lungs don't play ball anymore, it isn't something I can really do much about and to be honest I have accepted that, well I had to, didn't I? I couldn't just stamp my feet and have a hissy fit over not wanting to be sick anymore because it wouldn't change that. You just learn to make the best of the situation even on the bad days. Even the days when you feel like you just want to wave a white flag and give up, and there have been a fair amount of those days, trust me.
The key thing is finding little things to make you smile. For me, its the small things like the funny "Wheee-eeeeeee!!" sound that Yugi makes when he comes up to see me or watching Loki as he binkies (a kind of weird hop that bunnies do) and of course watching Little-Red popcorn and snuggle right up to me as hes being handled, or that derp-face! There is a magic that animals have, I know it sounds corny and a bit silly but my animals are the closest thing I have to children. I have raised them, taught them right and wrong and loved them from their cutest to when they have been going through the "naughty" stages. Raising animals fills a need in my life to need and be needed by someone. They may not be humans and they only stay with us for a while but the love they give is so real and so precious. I have never lived in a home where animals haven't been a part of it and its not something I think that I could ever do. After all, an empty home is like an empty heart. I have always had a thing for small animals, particularly hamsters, guinea pigs, rabbits and even rats. I think that there is so much character and personality in them and they really are fun to get to know, and contrary to what people think, they aren't stupid either. My pets are what has kept me going when nothing else could.
Since Jace came to live with me, things have been so much easier and we are both really happy together. We have our own little bungalow in a quiet area, lots of space and a large garden. We may not have the lastest games consoles or the latest other things but we have one thing that no money could ever buy, we love each other and to be honest, that is something to keep going for in itself.
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
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.
Tuesday, 28 February 2017
Friday, 17 February 2017
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!
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
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!