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.
Saturday, 28 March 2015
Thursday, 26 March 2015
At my GP surgery, a routine appointment can take up to 2 weeks to get. I'm lucky that I am under a "priority" scheme which means that if I call up the surgery and explain who I am and what I need to discuss, they will try and see me sooner than if I was anyone else. This idea of a priority scheme is a good one I believe because it means that people, like me, who have severe chronic illnesses which can (and often do) get worse very rapidly, can access the care they need quickly and intervene before things get too serious. The problem with me is that I have a habit of getting used to a certain level of "crap" that I sometimes forget that what I am experiencing isn't "normal" circumstances and it isn't a regular way to be.
I keep trying to think of why I do this to myself now. Before, there were reasons I think I never really got past them. I haven't been in that situation and the memories should be allowed now to fade. I won't get punished for seeking help. I am worthy of help. I need to stop convincing myself that I'm some kind of hypochondriac. Whenever I go to the doctors I always have a genuine problem and they always give me something to try and help that. I do think that sometimes the GP wants to hit me with a giant mallet with the word "NO!" on it whenever I start doubting myself. I spend most of my days and nights managing the routine of medications, monitoring, physio and other things, on TOP of having a life, doing "normal" things like going out and doing stuff. You know, fun stuff.
I had a lung function test done. It's interesting because before no one was sure what was happening to me and there had been times whether it was contested as to whether or not I was asthmatic (this was years ago mind, I think it was that degree of "hey, maybe it's not..." that fuelled a lot of my more reckless behaviour about the whole thing) and I think now it has hit home. It has kind of given me a mental bitch-slap to not take risks with no reason. I knew my lungs were struggling and I knew my function wasn't going to be upwards of 60% which it was less than 5 years ago (even more staggering that 10 years ago I was near 80% function) and now I have about 46% of my lungs functioning, off oxygen I can't keep decent saturations anymore and there are days when I am confined in a body which is slowly failing. My lungs are slowly failing and I am dying as a result. I find that hard to admit and take in to account. It scares me and I hate knowing that one day something is going to happen. The uncertainty. The fear. I feel cheated and knowing that there are people out there who made me miserable and it is cruel how they will get to go, live long lives and do everything they can and knowing I may not make it to 30. It doesn't seem fair.
I guess that seeing it all there, in black and white really hit me. Before there was a degree of "it could not be so bad" and possibly some cure on the horizon. I never realised how hard I clung to that. If there was another explanation, maybe there would be more we can do. But to be told that in no uncertain terms that there is no getting better now, all we can do is try and make it easier but there will never be a day when I don't need to take meds or be on oxygen. This is lung failure and until it gets too bad, all we can do is make the best I get (which isn't actually good at all) work. It is the hardest thing to return from an admission and only be ever so slightly less unwell and knowing that really there is little point on going at all because we have the barriers we have. Its surprising that as soon as I could, I let myself finally fall apart. Natt had to hold my limbs so I wouldn't harm myself because I felt so upset, angry and wanted to make a person suffer, but would that fix my suffering? No.
Tuesday, 24 March 2015
So yeah, I'm sorry for worrying everyone.
Its not been too bad as yet. No one has had any stupid ideas when it comes to my meds, there was a mix up at first but we sorted that quickly and the slight issue with my IV but that hasn't happened again.Things seem pretty balanced out for now and it looks like I may be here for a few days yet. I don't like the idea (who would?), but if it gave me the chance to get better then I have to just relax and let it happen around me. I think we need more in place for long term, as I seem to have "flares" of the infection regularly and if we could manage it better then I would do that. It's not that I have any personal issue here, its just that I would rather be at home with my own surroundings and relax than take up a bed here. The nurses seem to like me though because I do most of my stuff myself (apart from meds) and I don't constantly call them away from their work. I have been on wards where drug rounds for 6 have taken 2 hours because of patients spitting meds out, violent outbursts and a nurse being called away by someone who wants to be waited on hand and foot.
I think some people forget that a hospital isn't a hotel, care home or spa. A lot of patients whose families are selfish enough to not want to allow them at home are left in a place where they have vulnerability to infection and subsequently end up dying in hospital with their dignity stripped away. The ones who want to be pampered should remember that they are in a ward with others and that they can't be pampered just because they want that. I do think though, there should be a place for younger people in the hospital as for someone who is young, it is a daunting, lonely place. I don't mind older people, the wealth of their life experience is amazing, but its hard for someone my age to feel less frightened or isolated. I'm always the youngest person in the ward which is weird because if I didn't have my phone or laptop, I think I would climb the walls by now.
I want to go home but the team are trying to work out what the long term plan is here. The problem is, we need to know what to do to keep this from happening over and over again, I'll finish my antibiotics tomorrow but I'm not really much better... seems like a load of stress over nothing really. I feel like we're putting a sticky plaster over a broken leg sometimes and the affect on my quality of life is shocking. It really is. The reality of my condition is that on my good days, I can walk around and do things carrying my oxygen around and then on the bad days, I feel like someone has beaten me all over my chest. Knowing there is a large possibility that the main issue is my asthma is as it is. Its hard to constantly manage my asthma because it is so varied between days. Some days I can be alright and doing what I have to. Others I will be out of it and sleepy. No one seems to know why this happens and what to do about it. I confess, its not exactly what I wanted for my life, but there is no use crying over spilled milk, it'll probably never be perfectly better. It sucks but I am ging to try and remain as positive as possible because if I do keep my chin up,maybe one day things will get better and maybe one day I can walk more than a short distance, but I suppose it is all about perspective isn't it?
I think my biggest worry is for the long term. What is the long term prognosis and is my future really going to be completely uncertain? Will I always be this way or will they manage to fix it or make this settle down? There really are no ways of finding out just what the long term effect of all this is going to have and I guess the uncertainty is what scares me the most. That and my fear that I will never be out of this place! I think I'll just have to take it each day at a time won't I?
Thursday, 26 February 2015
Sunday, 22 February 2015
One thing that people ask me about is the readings and numbers I have to check and keep an eye on and what those readings mean. Taking readings and clinical measurements is important when it comes to monitoring and managing a condition. Certain ones can show how serious things are.
The most important reading that any asthmatic should know and measure is peak expiratory flow. This is a measure as to how well your lungs are working at any given time and can point out whether things are suddenly getting worse. It is a reliable tool to show how well the medications are working rather than word of mouth. Its measured in litres/minute and a reading is taken by blowing as hard as possible in to a plastic tube or meter. I use an electronic meter device called a Piko-1. I find it more convenient and reliable than the plastic tubes you get from the doctors.
For someone my age, sex and height, a normal value would be 450 l/min. My personal best is 400l/min when I am well. My 75% mark (which indicates that I am starting to become unwell) is around 300l/min. Usually from here, I have to start being cautious and keep a close eye on things. If it goes below 250l/min, this is where we really start worrying and look at seeing a doctor asap. My 50% mark, anything below there is considered "critical" is 200l/min. Usually if things fall below there, I'm going to start showing signs of slowing down. My oxygen levels become unstable after the 150l/min mark and the usual protocol is to nebulise first and if things get worse or I drop suddenly, call 999 and get an ambulance. This is the point where things start getting life threatening so calling an ambulance is more than appropriate.
Calling an ambulance isn't something I take lightly. I'm not the sort or person who calls them for little reason and when they are called, they are always the first to say that I did the right thing, if not a bit later than I ought. I know a lot of people would say "its only asthma, why are you calling an ambulance out? They're for life threatening emergencies" and to them I say "my asthma is a life threatening emergency. Had I not made the call then I could have died." There's been times when the person who was with me has had to be warned that either an intubation maybe on the way or that there was a chance that I could die. Its a scary thing and knowing how close it's come does tend to make me worry but I try to do what I can.
Over the last few days my peak flows have again dropped to below the 50% mark and although I'm keeping on top of it, I can't deny that I haven't been at all well. I've been sleeping a lot, barely interested in food (its been a recent worry that I've not been asking for meals due to no appetite and my breathing has been worse) as well as a cough that's become quite weak. It'll be alright though, I know my limits and when things are getting too much I know what to do. Although I am really hoping it doesn't come to that.
Tuesday, 17 February 2015
I've been working hard recently on my drawings. I find drawing so much of a positive use of my time and money (I admit I do shop for the high end, decent materials because well you get what you pay for in quality, plus cheap stuff never looks good anyway). It gives me something to work on and when its done, it is heartening to have someone look at your book and enjoyn what they see. It makes me feel good and no one can ever take that away from me.
Right now, my project has been drawing the cute Pokémon characters I've come across in the game. I'm playing Y/X at the moment (I've completed the story of X admittedly) and I have hundreds of these cute creatures. When my carers come, I do like it when they ask if I've drawn anything new. I'll never be a manga drawing master but I'd like to think my work is at least making people happy. The only thing that bugs me is that the alcohol based markers I use (I use Letraset Promarkers) are a bit heavy on my chest. Its a shame really because the colour laydown is so smooth and they blend well. (Colourless blender pens, probably one of the most important as I use them to blend lines, shade and generally do with my hands what I used to rely on digital touch ups to do.) I do recommend them even if they are a bit pricey. As I say, when it comes to art equipment, you get what you pay for and these pens are brilliant.
I'm lucky to have something to just do for fun. I couldn't imagine what it would be like to not have my own place to belong and make my mark on. As I've often said, I may not be able to do much but I do like to do things properly. My lungs may be failing but its not going to mean the end. One day I'll get some new lungs and when that happens, I'll carry on making my life as good as it can be. I don't mope about the past, to be honest, I don't ever give the people who hurt me the satisfaction in even being in the background of my life. They don't exist in my life. They don't deserve to have any part of the weird and wonderful life I have and they don't deserve to make me feel miserable. After all, no one can make you feel inferior without your consent. Besides who would choose abject misery over the chance to enjoy life. I choose to live my life and do the things that matter to me. Life is short so we should make the most of it.
Natt will be moving on soon, I won't divulge the details as its not my place to disclose someone's personal details without consent. People are entitled to privacy. I won't lie, it'll be nice to have my living room back and when we finish doing it up, it'll be lovely. That doesn't mean that I won't miss having him around. The thing with a close friendship like that is that no matter what, there's always someone to have your back and you have theirs. It was good to help out a friend during their time of need. I didn't do it for anything else, just that he needed a place and I had room. To be honest, last year was a trying one for us both, we both had major health blows and we supported each other. And even when he's not living here, we won't be strangers. After everything, I don't think we ever could be. We are all like siblings here and we look out for each other. We have been friends for nearly a decade after all.
I don't think I could be without all my friends and family, including the furry critters. Its hard to imagine but my little Tenzou is 3 years old now. I remember when I first got him and his brother, how tiny they start out. I remember a time when I could hold Bumble in my hand and his ears were huge compared to the rest of him. Its weird to see my little fluffy boy become the cute, crazy little thing he's become. They're all special and they all have their own funny little characters. This is why I love them. The bunnies too. Ginger and Loki have grown up well from those tiny little kittens, and they really were tiny. Don't think my house would be a home without them.
I'm just hoping to get better over the next few days. My lungs have been full of muck again and I've still got the strange spots all over my neck, chest and back. We don't know what it is but it seems that whatever it is, its possibly reached a systemic level which could be dangerous so it may result in a trip to the horrible place but I don't want to say too much. If it happens it happens.
Sunday, 15 February 2015
I had been planning a valentines day with Jace. It was disappointing that this couldn't go ahead because of my chest and my body coming out in a nasty rash (itchy, burning AMD blistered) but it didn't mean that there was any love lost. If anything, Jace showed me love with sweet messages and generally being there for me. The distance thing is tough though and my physical limitations can sometimes make things tougher. But in a way, the fact we're still together and as in love as we ever were makes me appreciate him more. We have had times where its been rough, last Christmas was probably the worst because I was stuck in hospital. Unfortunately that is a recurring thing and nothing apart from new lungs one day will fix it.
I'm lucky to have people around to offer love, compassion and support when its needed. Even if it's just popping in to the bedroom to ensure my comfort or going up to the local shops. When I think about where I was emotionally just 4 years ago and compare it to now, I realised just how far I've come. From browbeaten and miserable to bold, confident, independent and happy. It has been a heck of a journey, one where I had to accept that this is what my life is, but a journey I am glad to have taken. That's why I now venture out of the house, yes in my wheelchair and yes I have my oxygen on, and hold my head up high and feel proud.
I love my wheelchair, the one thing it has done for me has its given me my freedom back. Walking around town lost its fun when my lung function started to fail. Limping about as much as possible and then having to go the long way back on the bus just so I could run a nebuliser through. I remember the first time I used a scooter in Tesco. Becky and I were doing our shopping and thought it better as I'd just left hospital and could barely stand up. Since then I've gotten more confidence. I've been using a scooter/wheelchair for nearly 2 years. Its made a difference and I'd like to think that even with morphine on board, my control is excellent, also been told that by others so I have to be doing something right. I've not run in to any one, deliberately (not that I ever would? I mean who would deliberately knock some one over with a wheelchair, there's got to be something very wrong with someone to do that kind of thing) or otherwise. When I'm in control of that chair, its my responsibility to make sure that I, any company I have, and the surrounding people are safe.
Today seems that I'm feverish and drowsy. Kind of part being poorly but still it isn't really nice to feel like you've been burning up. I think the worst thing is how draining it is. It'll get better, just need to fight the infection off then the inflammation and fluid will go away. Just got to take it one day at a time.