For life's little ups and downs.
I started this blog to tell my story, about who I am and what I do. I live with 2 mental health problems as well as a disabling and sometimes painful physical problem. 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 went through hell due to bad diagnosis and poor clinical care, and I suffered a lot as a result. I do my blog to tell a story of hope and how a heart full of pain and sadness can find a beautiful light inside. I agreed with Cissnei in Crisis Core when she said that "Wings symbolise freedom for those who have none". I have always dreamed about having a pair of wings and being able to fly away from all of the things that hurt me in life. Sadly many times my wings were clipped or even pulled away and I was left with nothing.
I'll flap my broken wings and erase it all someday... You'll see.
Thursday, 17 July 2014
I am glad of my medical teams and the people who work to keep me well. There is a new scheme at my doctors for people like me who are more likely to become so unwell to warrant an emergency hospital admission unless seen by a doctor quickly. They want to help me, and my carers, come up with a strong care plan so that if/when things do start getting ugly, I won't be waiting a week to see a doctor and run the risk of getting to that critical stage where all we can do is call an ambulance and go to hospital. Also, we have assessed my oxygen needs (although the GP actually questioned the nurse's suggestions for the oxygen to just be for walking around, the doctors said that wouldn't be appropriate for me and have agreed with them to carry on with my usual routine, o2 during the day but unless I have had a particularly bad time, try and avoid sleeping with it.) and it looks like the home oxygen is going to be a permanent thing. I don't mind it as much these days, I know its a responsibility to make sure that I am using it correctly and getting my refills twice a week.
You see, it was originally a trial to see if I would benefit from it and its been decided that I really do benefit from it and it has changed my life considerably. Admittedly, having to keep pushing my cannula back in to place is a pain but its something I can and will be able to adapt to. I am so thankful for the oxygen nursing team at the Alex as well as my consultants and GP because without it, my life was frankly so miserable and I really was struggling to find reasons to do anything anymore. I think I did get a bit depressed because I am never really "well" and sometimes I am stuck between the point of going in to hospital and managing at home. I like to think that I do try and manage at home as much as I can, but there are days when I feel like its too difficult. On those days, I tend to lay low and rest.
One thing that has come of being so much better has been that I have actually felt like socialising again. OK I go to a group where I can talk to some new friends, play a few games and generally feel relaxed and enjoy myself. I won't put the full details here for obvious reasons, but being able to go and play the game with other people has really boosted my confidence. The only thing my ex did that was positive was introduce me to a card game called Yu-Gi-Oh. I've been collecting the cards again and making some rather fun decks to use, sticking to the 40 card limit which actually works better than 60, and I enjoy it. OK I am yet to win a battle at the club, but that's why I have spent some time reworking my "Cyber Dragons" deck as well as adding some powerful things like the sought after "Blue Eyes White Dragon" and "Light and Darkness Dragon" cards.
The club really has brought me back to life a bit and I love going to see the others, play some rounds and talk about pretty much everything else. We do play tournament rules though and it turned out that the more "basic" version of the game we used to play was actually wrong in so many ways and didn't adhere to most of the rules, plus cheap, fake cards are totally frowned upon! Who would have thought that I am actually a social person? I enjoy it and I feel confident in the club. The others have made me feel welcome and they have even said that if anyone comes to cause trouble, they will be kicked out. Since making new friends, I have been growing in such a way that I am actually dressing like a woman and acting feminine.
I play the game with Jace as well. It is one of those bonding things that we do and enjoy. He is a huge fan of the game and helps me build the best decks I could have. It's good to have something, well a lot of things, to share with someone and we don't get pissy if we lose. In fact, we tend to smile and try and work out better strategies, which for me is great fun. We also like watching films or anime together, gaming and generally just enjoy each other's company. I am proud of Jace for how he's coping with things himself, particularly when it comes to my illness and what that means in terms of quality of life. He knows that until I need new lungs, the aim is to at least keep me comfortable and make sure that I can at least enjoy life. Even if that means doing so in a wheelchair and carrying my oxygen tank around with me.
I guess it has been recently that I have really started to appreciate the little things. I even did something that I haven't felt confident enough to do for years, clothes shopping. I brought some nice Hogwarts shirts and new jeans. Also I brought a simple purple dress which looks great with the jeans and actually complements my shape. I am happy that I am back to a reasonable size 12 and it feels really good to have the confidence to show my body off (of course not in a dirty way, in a "I take pride in my appearance" way). I like going shopping with my friend and we sat yesterday talking and having fun while we had lunch at Subway. I have really gotten in to Subway recently. I enjoy a nice sandwich and drink, sit with friends and talk over everything. My friends are trying to encourage me not to be so shy about things.There really is nothing to fear now. Whats the worst that could happen? Pathetic people talking to other rather pathetic people and saying what they think. I don't actually care what some people think or say about me. I know who I am and the people who know me know that I am a nice person.
No one was or is judging me apart from myself and my own low self esteem. In that, I managed to convince myself that I was this fat asexual lump that people look at and say "look at the state of that..." but I found that all I was doing was putting my own negative feelings towards myself on to other people. No one is that bothered about how one person looks at any one time, just so long as you aren't dressed in such a way that makes a scene. I'm really learning about how to be confident and how to stand up and accept who I am. And I like that person, yes I am a little dysfunctional at times but hey, at least I can hold up my hand and admit it! I do see my physical and mental flaws but I don't think that makes me "damaged goods" or less worthy of happiness. Happiness (and unhappiness) is created by the individual making the choice for themselves on what they want. It's not anyone's "fault" or anyone causing the unhappiness, we should take responsibility for our actions and how we perceive life. It took me a while, but I know that now.
Saturday, 28 June 2014
Its been a bit of a rollercoaster these last weeks, both physically and emotionally. The first thing was going to see the doctor on Monday as the antibiotics I have been using weren't really doing a lot at the time, so we switched over to Ciprofloxacin and the doctor said she would phone my consultant teams and find out what the best thing for me would be next. My aminophylline level was at 7.9 last time it was checked (which was 4 hours after the regular dose in the morning) so we may have a margin in which we can increase the Phyllocontin with (this is the first time in years my aminophylline has been measured so that is a concern as it should be reviewed every 6 months...). Also was the concern that my WBC is still incredibly high and I am generally not very well at all. I am still coughing and I am still very feverish, the bottoms of my lungs seem to be taking the brunt of it all and I am exhausted!!
Another blood test had been arranged (it was supposed to be Friday but there would have been no way to get the blood to the labs on a Friday evening) and we want to check all the bases as I have some symptoms of an underactive thyroid. If this is the case then it would explain a lot of my recent problems and it is a very easily treated problem if that is the case. This could have been missed for a long time and the symptoms were just dismissed as effects of other medications I use (steroids can be prolific for causing all kinds of problems) and as a result were left to run amok in my body for quite some time. I have a particular problem with my immune system attacking itself rather than anything that has made its way in to my system, so when we get the results back probably the week after next, after my o2 assessment which I am worried about (although I think I know deep down it's going to be fine and I won't have to worry really), and then we can go from there. Until then, I have to just try and try and get rid of the chest infection I have had for so long now.
The other problem we are worried about is that from nowhere, I have developed loads of strange bruiselike marks on my body. I haven't been knocking myself but we have watched them appear from nowhere. When we were at the Court on Wednesday, I watched one appear on my arm just before I went in to the room. Hopefully it could be down to one or two small issues which are easy to sort out and nothing too sinister. If it needs to happen, the doctor has said that she will make sure that I am admitted under the right consultant if I had to go to the hospital. Fingers crossed though that it won't come to it, but realistically, I have to be prepared for anything.
I mentioned briefly that I was at the Courts on Wednesday. No, I am not in any trouble!! I was a witness to a rather horrible event that happened in the flat above me. I can't really discuss the happenings of the case or the evidence I had to give, but the up side was that I did see Becky again! And we had a long, happy chatter. It was like she had never even been away and we are making some plans, but again, I won't say much here as well, the best kind of prize is a surprise. I've always felt like I can talk to Becky about things when they bother me and as much as I love Natt and Tash, there are some things that I don't really feel like I can talk to them about. One of the biggest things that she noticed actually was how much better I am now I have my oxygen, before she left, I was barely able to say much and was almost always asleep. So it makes a change to be awake for once!
I am really hoping that these bloods show something that can be put right and even if I have two thoughts about what that may take. I am hoping that we can get to the bottom of it all because even the doctors agree that this really isn't fair on me at all. I've been going around in circles and things haven't really improved or if they have, they have quickly dropped again and right now I am really having to push myself further to do routine things like dressing or eating. I went for my chest X-ray today. The shadow is still there and its taken up a chunk of my right lung again so that's still full of infection and inflammation (which explains why I feel so poorly still) and we need to see a consultant again soon because we desperately need to get this back on some kind of even keel and maybe reduce my body's need for oxygen and steroids because frankly, I want to be able to do things again and live normally.
I'm not ready to accept that for now, all they can offer me is palliative care. Its ironic, the amount of times I tried to end my life, I'm now fighting tooth and nail to stay alive. It comes back to an album my first boyfriend and I tried to help promote back 2004. 10 years and the name of the album has stayed with me. It was called "Suffer, Survive." and that is kind of what I do. I suffer sometimes and physically struggle to keep at it, but the other side of it is that I am surviving. I know people who would use a situation like mine to gain constant sympathy and "awww poor old you...." And it makes me physically ill because that is one thing I don't need and certainly don't want. I need to find out how to make my life count and I want to survive long enough that I can see what the future holds. If it was pity I want, I'd not be fighting so hard against something I hate. Maybe one day, there could be a cure?
Tuesday, 24 June 2014
I'm finding it very perturbing that after its been noticed by everyone else that doctors are still not realising how serious asthma is and it's caused so many unnecessary deaths (3 people a day die from asthma in the UK) and suffering to people and their families. There are 2.6 million people with Brittle or Severe asthma in the UK.
I'm one of them.
Had my asthma been better controlled in my late teens and early 20s then admittedly, I probably wouldn't have got so unwell with it. I had episodes where I would be a bit breathless and since the age of 18, I have had asthma symptoms. There was a point where my asthma was better controlled with only 4 medications, 2 of which were in a combo inhaler, and I used to be active and full of energy. A few puffs on my blue inhaler were often the only thing I needed. I used to love cycling, walking, playing the flute and I even used to live in an attic flat. I had my bad days but there were less of them.
I developed pneumonia at the age of 21. I don't think that my condition was ever made completely better because the personal circumstances at the time. As a result the decline began. Soon I had to give up college, then looking for work and here we are now. I'm 26, I can't walk more than a few yards. I'm oxygen dependent and rely on over 20 medications which can mean taking up to 50 pills a day, nebulisers and liquid medications. I use a wheelchair to get about and even after my less than helpful consultant (he used to say asthma wasn't a real disease) admitted I had severe asthma, no matter what was suggested by numerous consultants my GP wouldn't do anything, so I saw a new doctor.
I don't think that until that point we were being taken seriously and by the beginning of this year, I was very sick. I've been admitted to hospital for on average a week at a time, 6 times this year. It's been the hospital doctors who have made the most impact, instead of shrugging and refusing to help, they took my declining symptoms seriously and through that, my life has improved, but I do sometimes find it hard to accept that the damage has been done and that I probably won't ever be totally better without the possibility of transplant when my lungs can't cope anymore. That won't be for some years though yet! I'm not finished living my life yet and quite frankly, I'll always fight to stay here and spread awareness.
I want Brittle Asthma to be noticed, I want to break the stereotype of asthma being a disease which people find so funny. It may be portrayed as the stereotype of either a fat kid who can't walk far or the American "nerd" but I find that so ignorant. People who say "its only asthma!" or "[insert name here] has asthma and they can still work and aren't that bad" or "you're just depressed" are just as bad as the doctors who choose to not notice the severity of the condition. Yes, some people with asthma can get by on inhalers, but the reality of Brittle Asthma is that it doesn't act like normal asthma all the time. No two brittle asthmatics are the same and we never usually fit the textbooks.
I can't even begin to describe the impact this has had on me. I'm so used to doing everything for myself and being able to do what I like when I like. It has changed everything. My priorities are different and I'm just grateful to get the time I get, as grim as that sounds, because I do feel like I'm walking on a tightrope and when my asthma gives me hell, it can be hard to stay on it and not fall in to the abyss below. I go down hill fast and it can be hard to explain to a doctor or paramedic who doesn't understand the way BA works, we can be fine one minute and close to ITU the next and unless someone understands that, it can be very hard to get help when you need it the most. I've lost count on how many times I have gone in and complacency has meant that symptoms are prolonged, I became worse and almost died as a result,
I'm hoping that by my own way of really trying to break the ignorance and the publication of official data and a review of how asthma is handled, both in emergency care and in the community. No one needs to die from asthma, 9 times out of 10 asthma deaths were avoidable, and I think that doctors need to be more aware of the severity of the situation.
Saturday, 21 June 2014
I can't sing praises of both my new nebuliser and my oxygen enough. The oxygen has really had such a positive impact on my life. I know it's a one way street really and it will become more and more a part of my life as I get older, I know this. I understand this. But as long as I get to keep my independence, I am happy. Don't get me wrong, I would have loved to be independent and not in a wheelchair but I am glad that I was given the opportunities to get things sorted to get moving. No one has to be a prisoner of their own home or their condition if they get the best support. I have good friends and an amazing boyfriend, I was shown what I was actually entitled to and how to get that and I have a good team working with me to try and keep things stable.
It really helps to know that when you feel like screaming, shouting and basically exploding, there are people there to help you pick yourself back up again. I don't have to, and I am not going to, go it on my own. My illnesses threatened to isolate me and leave me friendless and miserable but they didn't bank on me not letting them. I don't let ignorant people get me down and I don't let anyone who wants to hurt me do that. I had to learn the hard way, not everyone is going to like you and not everyone will agree with what you say and that's OK. You can't make friends out of everyone and on the other hand, a lot people who meet me after being told the "horror stories" actually realise what I am really like very quickly and there and then, I tend to make a new friend.
I know I am strong willed as well. I get this from my Mum. My Mum has an iron will really and whatever she wants, she tends to get it for herself and will tell you when you need to grab the world by the scruff of the neck, shake it down and get back up. During some of the more difficult times, it was my Mum telling me to do just that which has stuck with me. Don't like your life? Change it. Do the things YOU want to do. Don't focus on what another person says or does. Be the change you want to see. Forget the blame game, you are responsible for your own actions and the outcomes of those actions. Life is too short to spend wallowing in your own self pity and to be honest, I would find such an existence (because it isn't a life) is frankly a pathetic waste of a life. Yes we all have times where we want to feel miserable, but honestly, how long are you going to wallow in it?!
I'm not saying that we don't have downers. Heck I get them sometimes and during them, it hits home the things that used to bother me, and you know what the worst thing was? None of it really mattered in the end. Maybe it's knowing the stuff I know, but it isn't every day that you get a life changing diagnosis and it does make you re-evaluate everything in your life. The small, petty stuff doesn't matter anymore and all you want to do is make the best of the life you have. I'm going to live my life and enjoy it as best as I can. It has always been how I have survived from everything and came back with a brave smile and try again. I have done some pretty cool stuff in my time and I am not ready to stop just yet.
I am working through my list if things I want to do and my friends are trying to arrange something for me (they won't tell me what though so I am really wondering). I am working on not wasting a moment, I can't say how long I'll be here, but I intend on making that time as amazing as I can. Either through experiences and doing everything I enjoy (of course making note of limits and working around them, for example, if I went to a concert, I would have to be in the seating area instead of the pit because frankly I would die in the pit and oxygen tanks aren't exactly light!) as well as making memories with the people who mean the most to me and if that means that I have to be in a wheelchair with an assortment of weird medical equipment then so be it. Everyone needs a talking point I suppose and if people actually ask me, I will tell them what it is and what it all does.
I'm still struggling with this chest infection, I woke up at 7 this morning just to start a 3 hour session of coughing, bringing up green slime and trying as hard as I could to shift whatever the hell I could from my chest. I usually get this after a couple of days of antibiotics when I start getting the energy to do so. Sometimes with me, it isn't whether I bring stuff up, it's when I go from hacking up a load to not hacking up at all. It happens when I have no energy and when I get to that state, things are getting pretty bad and I have to see someone sooner rather than later. It becomes more shocking when I actually make the choice to go to the doctor off my own back.
Usually I will avoid this as best as I can, after nearly a year of being given no hope of any way of getting better, I stopped seeing the point in it. I think after it was my 6th long admission this year for my asthma (one where I stay more than 1 night in a ward) that I decided to try a different doctor and get a fresh pair of eyes on this. Turns out there IS hope and I am getting some help and things are getting better because of that. With the right help, on some days, I actually get some feeling of what well-being feels like and those moments are so precious to me.
Thursday, 19 June 2014
The biggest thing that is driving me rather spare is that I want to get out. I haven't been outside since Tuesday and I am starting to go a bit stir crazy. With the "considerate" neighbour of mine who seems to like playing her music incredibly loud (it drowns out anything else), I have been wanting to go out more and more just for some peace and quiet. Being pretty much housebound isn't fun. There really isn't a lot you can do when someone's being intrusively loud and all you want is to just go to sleep and stay there. The really annoying thing is that it goes quiet around 3-4pm, just in time for the kids to come back from school, and you can't really begrudge them time to play outside after a day of being trapped in a classroom all day. I remember that I was a kid once and I too liked to play outside after school and we probably made the residents of Cull Avenue pretty miserable (in fact there was one woman who used to yell at us, especially when the boys kicked footballs at the wall).
Kids and annoying noisy people aside, my need to get out and do things is going to have to take a back seat because, if I can barely focus on anything, it is probably safe to assume that my being in control of a motorised wheelchair would not be among the wisest things to do and the last thing I would ever want is to run in to someone or run over someone's child. It's kind of a like it or like it scenario really. Even if it means that I am trying my hardest to find things to keep myself occupied, pottering around the bedroom, looking through my Yu-Gi-Oh! cards and making decks or playing on the X-Box, having rediscovered the great fun of EDF.
EDF (Earth Defense Force 2017 and 2025) is one of the funniest games I have been shown. The whole point of it sounds like a plot from a Japanese "B Movie". Earth is attacked by these aliens who have adapted to our environment as bugs. Very big bugs. So the aim of the games is to run around armed with appropriate weapons (for me that's an assault rifle for close up and a rocket launcher for far away, resulting in the bugs flying everywhere) and taking on ants and spiders which are bigger than most buildings and have a taste for human flesh. The funniest thing is when you pump 10 rockets in to a crowd of 20 bugs, they catapult out of the map which is entertaining to watch and then go and hunt them down one by one. This keeps me amused for hours, along with other games. I am a gamer and it is a good way of passing time.
I tend to play games while doing my nebs. Basically, when you have a nebuliser running, you have to sit down with it and relax. It works better that way and afterwards you feel immediately better. It tends to take 20 minutes on average to nebulise 5ml of solution (15 with my new bedroom neb). I had to replace my bedroom nebuliser because it had seen better days, taken several tumbles from the bedside table (resulting in the casing being held together by superglue) and the fact that it was about 20 years old. The motor was worn and frankly, it needed to be retired now (you can't even get the parts to it now) after I realised that it took nearly 45 minutes to do a neb and the noise it made was horrific!
I came across the new one when I was in Boots. I had gone in to get some lunch and see if they sold pulse oximeters (my one has seen better days, it was only a cheap one and it tends to say my SpO2 is 2% higher than it is when checked against the ones in the hospital) and happened to see that they stocked the Omron Comp-Air Basic nebuliser at a reasonable price. It's a tiny little compressor and it's so much quieter than my other mains powered nebuliser (a Medix AC1000, I brought it 3 years ago and it has been my workhorse) so I can use it at night without causing too much disturbance, also meaning that I am saving on batteries for my Micro-Air. Knowing it was an Omron as well meant that I knew it was going to be good. My Micro-Air has been my constant companion for nearly 5 years and it was either in my bag or in my bed. Instead now it stays in the bag on my wheelchair and I have my new machine to handle bedtimes and any middle of the night nebs.
Last night, I fell asleep with my oxygen on, and I managed to get a better nights sleep than I have in a while. I can't explain it, I was feeling awful last night and decided to leave it on for a bit to keep my chest at ease. It helped and I managed to get a good, restful sleep (I wasn't up at 4am to neb for once) and feel better for it. All things aside, I think my body is trying to tell me something about it's needs. It'll all be assessed on the 8th of July so we will know there and then just how much my oxygen has helped me. It's nice to be awake and alert and social again. When I was feeling very poorly, I just didn't want to be around people and would hide in my bedroom away from everyone and when I was out and seeing people, I would barely be able to say much and I never finished a sentence because I would forget what I was saying halfway through (more so when I was interrupted) and would trail off, my skin had a sickly grey tinge pretty much all the time and generally, I looked like I was moments away from dropping. It wasn't nice at all.
That's a thing of the past now and I am breathing so much easier and am happier as a result. Not something I ever want to take for granted again.
Tuesday, 17 June 2014
Then again, the doctor could tell I wasn't well, it's a hot day and there I sat cold, clammy and shivering like I was being kept in the freezer! As well as being pale as anything, struggling with my chest and generally looking and sounding like crap. Natt and Tash have been a bit concerned about me recently as I have been so withdrawn and generally not my usual bouncy self, preferring to rest in my bedroom, getting breathless even with my oxygen and generally not being able to keep up with myself. I had been worrying a lot about Natt recently as he had a rather life changing occurrence recently himself (I won't discuss this here as I honestly believe that it isn't my place to discuss the physical or mental health of another as frankly it is no one's business but their own) and I guess I feel a bit like its in bad taste to run him around ragged. Luckily Tash has been helping us to no end and I am grateful for her. She has been like an angel of mercy and we are lucky to have her in our little group.
Overall it has been a bit of a tough week and it's understandable that we have all been feeling the pinch really. Luckily we have all stood together and looked after each other and gotten through it all. It hasn't been at all easy and there have been tears, anger and other emotions all coming out at once, no one ever said that life was fair and that bad things don't happen to good people. I made the choice that my personal burden was mine to carry and that I was always going to live in hope that one day, I will get some new lungs, the ultimate gift, and I will one day be well again. I am clinging to that hope and I don't think that anyone or anything could make me feel any different. We all just have to keep going and moving on with life otherwise we will just wallow in self pity and stagnate. And that would be depressing.
The next few days are going to be a mix of meds, sleep, stuff to do, and more sleep. I am so tired at the moment that I am falling asleep just sat here! I have been waking up at stupid times because of pain and have had to have some of my morphine just to rest comfortably. Morphine is an interesting medication because as well as easing the pain, it makes me feel rather floaty and light headed. As a result, I end up curling up and drifting off to sleep after taking it. It does really help with the pain though and I am also doing better because of the oxygen, it has literally transformed my life and although I feel crap at the moment, I do feel better in other ways. I feel like I can actually move around more and I don't get as out of breath as I did beforehand. I do however have to stop small furry things from trying to chew the tubes. Bumble is the worst for it, but lately he has been a little devil in a guinea pig disguise! Gnawing on things he shouldn't or chasing Tenzou around the cage. I think when he grows up, hes going to be the dominant pig.
My pigs and bunnies are doing really well. Riza and her daughters seem to be content with either running around each other or all 3 of them lazing around the cage. Loki, the lone bunny, has established that he is a people's bunny and will do anything for attention or a good long cuddle (or to try and run off!). The kits are 6 months old now, no longer little baby kittens but fully grown, fluffy bunnies, they're all docile things (apart from Riza who is still a grumpy old girl) and they like to be stroked and cuddled. They also all like to lick. The new pigs are settled in as well. Tiggy and Scruffy seem to be more interested in keeping out of Tenzou's way than anything else, but Scruffy does need to be brushed more (he is about 30% fluff) and his fur refuses to lie flat. He's always going to look like a sentient toupee! Much like old Yoda really.
I do miss Yoda at times. That hamster lived a long, happy life and he was a funny little guy. He looked a bit like a running blonde carpet when he was going and he was the first ever hamster I remember being able to BREAK his exercise ball. Nero gave it his best shot but never quite managed. I think all my animals have a place within my heart and when they die, I do miss them greatly, I was heartbroken when Kadaj died, but I was devastated when Patch left us. People don't realise that despite them being "only animals" they are companions and they are special. Patch saw me through some of the worst times of my life and he was always there for me. It was him that used to be able to identify asthma attacks and squeak until we noticed, I even trained him to bring me inhalers which was good to watch. Goes to show, they aren't exactly stupid.
I think I am lucky to have the people and animals I have in my life. I decided that, after finding out what I did, that I was going to only have time for people who I deemed worthy of it. Not letting other people bother me and telling everyone, including Jace, Becky and Kat that they are the world to me.