Stuff
Ok...so after browsing through other people's diaries and seeing so many links to them from boards I thought I would do one myself. I figured that the first thing I should do was explain what all the diseases in my bio mean...since I seem to be the only walking medical dictionary that I know of...
I'm 22, and suffer from type one brittle asthma, M.E/CFS, Fibromyalgia and Vocal Cord Dysfunction (VCD). EDIT: As of May 2011 I also have Severe Obstructive Sleep Apnoea (OSA) EDIT: As of June 2013 I also have Vestibular Dysfunction
What the HELL does all that mean????? Okay..I'll try to explain it in simple words...
Type one Brittle Asthma - is NOT just asthma (we won't go through how many people I've had to tell THAT to!) It's a form of the condition that is uncontrollable despite loads of drugs - I take 13 in all...and about 9 of them are for the brittle asthma...one of them is a nebuliser and one of them is a 24hr infusion through a syringe driver. It means that I have attacks mostly everyday...I have oxygen at home and use a wheelchair to get around since walking makes me extremely breathless. I have frequent hospital stays and see my consultant every 6 weeks for check-ups and tests, like lung function tests to check how my disease is progressing and how my drugs are working. I have very strong beliefs about how this is treated at hospitals, I have had this condition since I was seven years old and have been in hospital so many times that I don't have good veins anymore, I have tried pretty much every asthma drug on the market, either they have worked or they haven't. If they worked I'm probably still on them or have been put on something else because it's stopped working. I know that BA cannot be cured, so if you have the "latest" thing off the internet, please don't paste urls to me, it's not that I like being sick, it's that I know my doctor will recommend any new drugs that have become available and I don't want to try anything else until he suggests it or until I have researched it enough to recommend to him. So, please, don't try and sell me the latest cure. I am also very aware that type one BA is terminal, to those who don't understand that, it means I will die from this. It could be in a few months, it could be in a few years...or it could be next week...my doctors try and give me an estimate, but seeing as I've proved them wrong a fair few times, we don't really go by that anymore. I am very open with this in my LJ so if that kind of thing bothers you, makes you feel uncomfortable or makes you think that I'm attention seeking, faking it or anything else, then leave my LJ and don't look back, coz trust me, you don't wanna go down that road. Ever.
M.E/CFS is a condition that most people would attribute as a tiredness thing..yeah it is ONE of the symptoms..for me it's exhaustion despite lots of sleep, muscle cramps that hurt like hell, an inability to concentrate on things that I found easy before, like small text - before I read like it was water and now I have to check the font size in the book before trying to read, if it's too small then I can't focus long enough to read it, it kinda sucks, brain fogginess, an inability to find the right word at times, muscle weakness - I have to use crutches at times to be able to stand for a length of time, an inability to lift things that are too heavy - and by that I mean a baking tray, a bad appetite, chest pains that are sometimes constant and can cause an asthma attack, cramps in my right shoulder and right side of my neck that are so severe that part of my neck/back is solid from muscle cramping...it is because of my ME and the brittle asthma that I am now in a wheelchair.
Fibromyalgia (FM) has similar symptoms to ME, but it also has pain in certain areas of the body...some of my skin is extremely sensitive to touch. Some days, even a hug can hurt me. My chest is extremely tender to touch, my cramps are controlled with daily muscle relaxants and daily painkillers. There are eighteen "trigger points" on the body and someone with FM has at least eleven of them active, I have pain in sixteen of them, meaning that the smallest amount of pressure can cause me pain. I also have a progressive form of FM, which some people say doesn't exist, but my doctor and specialist diagnosed me with it, which means that the FM will get worse and the pain will get worse, hence why I am monitored on a monthly basis by my GP to make sure that I have adequate pain control. The cramps can get so bad that my muscles twitch as if I'm having a fit, my face can look as if one side is paralysed, my hands can cramp up so much that I can't move. It causes me daily chronic pain, but I live with it. That doesn't make me strong or a martyr, it just makes me someone who lives with these conditions.
Vocal Cord Dysfunction (VCD) is a condition which doesn't really affect my life because it's only recently been diagnosed but I've had it for years. It means that sometimes instead of staying still when I breathe in, my vocal cords occasionally close. It isn't life threatening, but is usually set off by an allergic reaction, an asthma attack or an M.E./FM flare and the worst that can happen is I pass out due to lack of oxygen and my muscles relax. It usually just affects the way I talk and the volume of my breathing during an asthma attack. The rest of the time, it's not noticeable apart from when I'm usually tired.
Severe Obstructive Sleep Apnea (OSA) is a new condition for me, I was diagnosed in May 2011 after a home sleep study where I stopped breathing 106 TIMES AN HOUR! I do wonder if I breathed at all during that test. It's thought to be the reason behind some of my fatigue and have been issues with a CPAP machine - Continuous Positive Airway Pressure, basically it forces me to keep breathing, very useful, especially during times when I'm feeling crappy because my lungs are being buggers!
Vestibular Dysfunction is a new condition for me. I was diagnosed in 2013 after several collapses, falls and dizziness. At one point I fractured my pelvis from a blackout. I had an MRI and it showed damage to the medulla area of the brain. They finally gave me the diagnosis when they linked together the dizziness, vomiting/nausea, collapses/falls/blackouts as well as problems with my vision on occasion. This is an umbrella term to cover those conditions when there is no known cause of the damage (they think I had a virus or something) but it is present.
I think that's it...so now onto the other stuff..
I can't actually think of what to write...only that B has been plotting and now it's looking like I'll be off to Glasgow with her in June to do some serious stalking...she's decided that I *will* meet Busted before I get too sick...or peg it...if it's the last thing I do...which would be cool...meeting them and dying of shock...what a way to go!!!
I'm 22, and suffer from type one brittle asthma, M.E/CFS, Fibromyalgia and Vocal Cord Dysfunction (VCD). EDIT: As of May 2011 I also have Severe Obstructive Sleep Apnoea (OSA) EDIT: As of June 2013 I also have Vestibular Dysfunction
What the HELL does all that mean????? Okay..I'll try to explain it in simple words...
Type one Brittle Asthma - is NOT just asthma (we won't go through how many people I've had to tell THAT to!) It's a form of the condition that is uncontrollable despite loads of drugs - I take 13 in all...and about 9 of them are for the brittle asthma...one of them is a nebuliser and one of them is a 24hr infusion through a syringe driver. It means that I have attacks mostly everyday...I have oxygen at home and use a wheelchair to get around since walking makes me extremely breathless. I have frequent hospital stays and see my consultant every 6 weeks for check-ups and tests, like lung function tests to check how my disease is progressing and how my drugs are working. I have very strong beliefs about how this is treated at hospitals, I have had this condition since I was seven years old and have been in hospital so many times that I don't have good veins anymore, I have tried pretty much every asthma drug on the market, either they have worked or they haven't. If they worked I'm probably still on them or have been put on something else because it's stopped working. I know that BA cannot be cured, so if you have the "latest" thing off the internet, please don't paste urls to me, it's not that I like being sick, it's that I know my doctor will recommend any new drugs that have become available and I don't want to try anything else until he suggests it or until I have researched it enough to recommend to him. So, please, don't try and sell me the latest cure. I am also very aware that type one BA is terminal, to those who don't understand that, it means I will die from this. It could be in a few months, it could be in a few years...or it could be next week...my doctors try and give me an estimate, but seeing as I've proved them wrong a fair few times, we don't really go by that anymore. I am very open with this in my LJ so if that kind of thing bothers you, makes you feel uncomfortable or makes you think that I'm attention seeking, faking it or anything else, then leave my LJ and don't look back, coz trust me, you don't wanna go down that road. Ever.
M.E/CFS is a condition that most people would attribute as a tiredness thing..yeah it is ONE of the symptoms..for me it's exhaustion despite lots of sleep, muscle cramps that hurt like hell, an inability to concentrate on things that I found easy before, like small text - before I read like it was water and now I have to check the font size in the book before trying to read, if it's too small then I can't focus long enough to read it, it kinda sucks, brain fogginess, an inability to find the right word at times, muscle weakness - I have to use crutches at times to be able to stand for a length of time, an inability to lift things that are too heavy - and by that I mean a baking tray, a bad appetite, chest pains that are sometimes constant and can cause an asthma attack, cramps in my right shoulder and right side of my neck that are so severe that part of my neck/back is solid from muscle cramping...it is because of my ME and the brittle asthma that I am now in a wheelchair.
Fibromyalgia (FM) has similar symptoms to ME, but it also has pain in certain areas of the body...some of my skin is extremely sensitive to touch. Some days, even a hug can hurt me. My chest is extremely tender to touch, my cramps are controlled with daily muscle relaxants and daily painkillers. There are eighteen "trigger points" on the body and someone with FM has at least eleven of them active, I have pain in sixteen of them, meaning that the smallest amount of pressure can cause me pain. I also have a progressive form of FM, which some people say doesn't exist, but my doctor and specialist diagnosed me with it, which means that the FM will get worse and the pain will get worse, hence why I am monitored on a monthly basis by my GP to make sure that I have adequate pain control. The cramps can get so bad that my muscles twitch as if I'm having a fit, my face can look as if one side is paralysed, my hands can cramp up so much that I can't move. It causes me daily chronic pain, but I live with it. That doesn't make me strong or a martyr, it just makes me someone who lives with these conditions.
Vocal Cord Dysfunction (VCD) is a condition which doesn't really affect my life because it's only recently been diagnosed but I've had it for years. It means that sometimes instead of staying still when I breathe in, my vocal cords occasionally close. It isn't life threatening, but is usually set off by an allergic reaction, an asthma attack or an M.E./FM flare and the worst that can happen is I pass out due to lack of oxygen and my muscles relax. It usually just affects the way I talk and the volume of my breathing during an asthma attack. The rest of the time, it's not noticeable apart from when I'm usually tired.
Severe Obstructive Sleep Apnea (OSA) is a new condition for me, I was diagnosed in May 2011 after a home sleep study where I stopped breathing 106 TIMES AN HOUR! I do wonder if I breathed at all during that test. It's thought to be the reason behind some of my fatigue and have been issues with a CPAP machine - Continuous Positive Airway Pressure, basically it forces me to keep breathing, very useful, especially during times when I'm feeling crappy because my lungs are being buggers!
Vestibular Dysfunction is a new condition for me. I was diagnosed in 2013 after several collapses, falls and dizziness. At one point I fractured my pelvis from a blackout. I had an MRI and it showed damage to the medulla area of the brain. They finally gave me the diagnosis when they linked together the dizziness, vomiting/nausea, collapses/falls/blackouts as well as problems with my vision on occasion. This is an umbrella term to cover those conditions when there is no known cause of the damage (they think I had a virus or something) but it is present.
I think that's it...so now onto the other stuff..
I can't actually think of what to write...only that B has been plotting and now it's looking like I'll be off to Glasgow with her in June to do some serious stalking...she's decided that I *will* meet Busted before I get too sick...or peg it...if it's the last thing I do...which would be cool...meeting them and dying of shock...what a way to go!!!