So I decided that until I had something good to write about again I would just forget about the whole blogging experience but sometimes you have a bad day or a string of bad days and sometimes as hard as you try the positive refuses to come out so instead this came out (slightly edited as it was origionally an email sent to a wonderfully understanding person who woke up this morning and read an essay then spent an hour talking to me about options and what can make life better)
p.s. as I was about to hit post I noticed birds singing and the wind and rain that kept me company all night has turned into a clear blue sky. A very wise woman once told me that no matter how hard today is at a certain point it will end, the clock will strike midnight and another day is born with a whole world of possibilities (had to fit that happy moment in somewhere) Oh, and the names of the surgeons were changed although I am looking forward to the day I get to meet Mr Hand the hip specialist!
Ok, so I think I'm sinking, as much as I have been trying not to I think I might be and I don't know what I can do! I have been assessed for depression by the consultants at the Orthopaedic, Pain and Rheumatology departments, Dr K and an OT and they all agree that I'm not and in general I don't think I am but I still seem to be sinking. I'm not the person who sinks, I'm the person who shit happens to and I get through it I am NOT the person who sits in bed at 1:40 crying and having a panic attack because I spilled a drink on the sheets and couldn't move my hands enough to put new ones on so just covered the mattress with a fleece instead. I'm not the person who stays inside all day and only goes out to go to the hospital but that's all I can do because everyone is working and I can't put enough weight through my left shoulder of right knee to walk more than 5 steps without being in so much pain I just want to sit down and cry but I can't sit down and cry because I'm not that person either. I'm not the person who gets overtaken by an OAP on a zimmer frame while walking from the car to a building I'm the person who runs and swims and plays rugby and shoots bows and rifles and kicks ass at hurdles and never ever sits still but somehow I end up spending 23hours a day sitting still just to avoid being maxed out on morphine all day every day. And most of all I am not the person who can't watch Grey's Anatomy without having a panic attack because surgeons are just as human as the rest of us and all it takes is one slip, one wrong drug, one small mistake and everything could get so much worse.
I keep trying to figure out why it is so much worse this time than it was last time and I think it's because last time I had this surgery I was 19, worst case scenario my knee was permanently screwed but I had another knee and two hips and two shoulders so how hard could it be right? Well now I have no knees, half a shoulder, no wrists no elbows, no feet, one hip and a set of highly questionable ribs and vertibrae. You know it's true; I really have grown 3cm since I had my last knee sugary in May 2011 because the vertebrae in my back have shifted more than 3cm. I found out today that one of the (very few) people I know with EDS died last week in a very simple joint surgery because the person moving her from the OR bed to the ward bed dislocated her rib in just the wrong way and it pierced her lung which decided to spasm as lungs do so that was it and the thing is I'm not scared about making it through surgery. That'll work out fine and hey if it doesn't I'm never going to know about it but I know it will be fine because the part that scares me isn’t being pumped full of drugs or waking up on the operating table (again) or going into laryngospasm spasm again and trying to lie still while they try to force a tube down my completely closed airway with no drugs because that is the only way I will be able to breathe again. It's not the trauma syringes of morphine that they stab straight into the thigh because even under sedation it is one of the most painful things a person can experience, it's not the braking my bone in at least 2 places or the 24hour paralysis in that leg that may or may not wear off. The thing that scares me is what happens next? What happens when I've done this surgery and recovered enough and Mr Knee and Mr Shoulder start arguing about which order they should do the partial knee replacement and shoulder remodel, hey what the hell why not do them both at the same time, they are both on the left so still got my crutch arm and my writing arm what more do I need?
Oh and whilst they plan out the next few years of my life in surgeries at least I'll be busy filling in forms and being assessed for depression and whether I am capable of using the toilet on my own and whether I am disabled enough or too disabled or not at all disabled and of course there is the wonderful drug regime to focus on, which bearing in mind changing the tiniest dose of even one of my 11 current drugs could well be enough to put me in the hospital for a very long time or just finish me off completely, is kind of a full time job (and incidentally the reason that I am awake at 1am (wow apparently a lot to rant about here) because I took my morning pills late so now have to push the rest of my day later to get all the drugs in the correct timeframe with, you guessed it, a brand new set of alarms to remind me it's time to swallow another giant handful of drugs.
But hey look on the bright side right, it’s not a critical illness, it's not terminal it’s just 'life shortening' that is a really fun thing to be told especially when it is followed with 'and as you are no doubt acutely aware there is no easy fix, there is no cure, hell there isn't even a strategy but we have some handy pain management techniques and some nifty wrist splints that allow you to use crutches over short distances of carry a plate from one room to the next and there is always the option of mobility scooters, electric wheelchairs, devises to help you go to the toilet, meals on wheels and carers who can invade your house 2-3 times a day and help you to do the most basic tasks like oh I don't know, having a drink without needing to change the bed. Or we could just bypass that completely and go straight for the IV fluids and feeding you through a tube in your nose when the spasms get too strong to be controlled and you can no longer swallow for yourself. So yeah, it's not like its terminal or even something as bad as motor neurone because at the end of it the EDS itself is not going to kill you, that's not what it does unless you are unlucky enough to have the heart defect that gets you to about 40 then just randomly explodes. EDS is not a fatal disease but it is a life shortening one because it is a disease where triage is the only treatment and eventually that triage will kill you.
I know all this sounds very morbid and I really don't have any desire to die, I know that when they say life shortening they are talking about maybe living to 70 instead of 90 and I know that in the grand scheme of things there are millions of people out there whose problems make all this seem like a rainy summer day but I'm sinking. I'm not depressed, I'm not suicidal, I'm not really all that unhappy but just sometimes I sit around my room knowing that it will be 36 hours before I see another person other than to pass them on the way to the bathroom (which by the way is a very rare event these days because between morphine and dehydration there just aren’t that many reasons to make the trip-although I have resorted to going down there just on the off chance that I might catch Sam on his way to the kitchen or to his room and he may get over his fear of women long enough to speak to me in person for more than 5minutes). Sometimes while I'm sitting here waiting for other people’s lives to get to a point where they have the time to deal with me (and as much as it sounds like it this is not some no one loves me pity party it is a realistic understanding that people have jobs and families and lives which they have to keep on living and they should be able to without feeling like they need to be looking after me) sometimes I just feel like I'm sinking and it’s just hard trying to stay afloat. About the only thing I am any good for at the moment is being supportive to other people (which I love, always have and always will) but somewhere in all that supportiveness and all that knowledge that I am depending on other people to help me with things a 4 year old can do with very little problem it just feels selfish to say actually this is really hard. Actually I'm not ok, what is happening is not ok, what is going to happen is not ok, EDS is not ok and most of all it IS NOT FAIR. What did I do that was so wrong, why me, just why? And there just isn't any answer to that and even if there was do you think it would ever be a good enough reason to make you go, ah ok, I get it now, maybe it is ok after all because it's just not.
So this is me sinking, and grasping at anything that can possibly even begin to help me to stay afloat. And half a box of tissues and almost an hour later I have a rather daunting essay which I am sure I will regret deeply in the morning but right now it has achieved something. I am no longer having a panic attack, I am no longer crying and even if it's just for tonight it feels like floating may not be so hard after all.
I'm so sorry to dump all of this on you and please feel free to ignore it, delete it or file it under the insane ramblings of a sleep deprived panic having some kind of psychotic break (in fact I think this should go at the top of the message as well as a warning note)
I keep trying to figure out why it is so much worse this time than it was last time and I think it's because last time I had this surgery I was 19, worst case scenario my knee was permanently screwed but I had another knee and two hips and two shoulders so how hard could it be right? Well now I have no knees, half a shoulder, no wrists no elbows, no feet, one hip and a set of highly questionable ribs and vertibrae. You know it's true; I really have grown 3cm since I had my last knee sugary in May 2011 because the vertebrae in my back have shifted more than 3cm. I found out today that one of the (very few) people I know with EDS died last week in a very simple joint surgery because the person moving her from the OR bed to the ward bed dislocated her rib in just the wrong way and it pierced her lung which decided to spasm as lungs do so that was it and the thing is I'm not scared about making it through surgery. That'll work out fine and hey if it doesn't I'm never going to know about it but I know it will be fine because the part that scares me isn’t being pumped full of drugs or waking up on the operating table (again) or going into laryngospasm spasm again and trying to lie still while they try to force a tube down my completely closed airway with no drugs because that is the only way I will be able to breathe again. It's not the trauma syringes of morphine that they stab straight into the thigh because even under sedation it is one of the most painful things a person can experience, it's not the braking my bone in at least 2 places or the 24hour paralysis in that leg that may or may not wear off. The thing that scares me is what happens next? What happens when I've done this surgery and recovered enough and Mr Knee and Mr Shoulder start arguing about which order they should do the partial knee replacement and shoulder remodel, hey what the hell why not do them both at the same time, they are both on the left so still got my crutch arm and my writing arm what more do I need?
Oh and whilst they plan out the next few years of my life in surgeries at least I'll be busy filling in forms and being assessed for depression and whether I am capable of using the toilet on my own and whether I am disabled enough or too disabled or not at all disabled and of course there is the wonderful drug regime to focus on, which bearing in mind changing the tiniest dose of even one of my 11 current drugs could well be enough to put me in the hospital for a very long time or just finish me off completely, is kind of a full time job (and incidentally the reason that I am awake at 1am (wow apparently a lot to rant about here) because I took my morning pills late so now have to push the rest of my day later to get all the drugs in the correct timeframe with, you guessed it, a brand new set of alarms to remind me it's time to swallow another giant handful of drugs.
But hey look on the bright side right, it’s not a critical illness, it's not terminal it’s just 'life shortening' that is a really fun thing to be told especially when it is followed with 'and as you are no doubt acutely aware there is no easy fix, there is no cure, hell there isn't even a strategy but we have some handy pain management techniques and some nifty wrist splints that allow you to use crutches over short distances of carry a plate from one room to the next and there is always the option of mobility scooters, electric wheelchairs, devises to help you go to the toilet, meals on wheels and carers who can invade your house 2-3 times a day and help you to do the most basic tasks like oh I don't know, having a drink without needing to change the bed. Or we could just bypass that completely and go straight for the IV fluids and feeding you through a tube in your nose when the spasms get too strong to be controlled and you can no longer swallow for yourself. So yeah, it's not like its terminal or even something as bad as motor neurone because at the end of it the EDS itself is not going to kill you, that's not what it does unless you are unlucky enough to have the heart defect that gets you to about 40 then just randomly explodes. EDS is not a fatal disease but it is a life shortening one because it is a disease where triage is the only treatment and eventually that triage will kill you.
I know all this sounds very morbid and I really don't have any desire to die, I know that when they say life shortening they are talking about maybe living to 70 instead of 90 and I know that in the grand scheme of things there are millions of people out there whose problems make all this seem like a rainy summer day but I'm sinking. I'm not depressed, I'm not suicidal, I'm not really all that unhappy but just sometimes I sit around my room knowing that it will be 36 hours before I see another person other than to pass them on the way to the bathroom (which by the way is a very rare event these days because between morphine and dehydration there just aren’t that many reasons to make the trip-although I have resorted to going down there just on the off chance that I might catch Sam on his way to the kitchen or to his room and he may get over his fear of women long enough to speak to me in person for more than 5minutes). Sometimes while I'm sitting here waiting for other people’s lives to get to a point where they have the time to deal with me (and as much as it sounds like it this is not some no one loves me pity party it is a realistic understanding that people have jobs and families and lives which they have to keep on living and they should be able to without feeling like they need to be looking after me) sometimes I just feel like I'm sinking and it’s just hard trying to stay afloat. About the only thing I am any good for at the moment is being supportive to other people (which I love, always have and always will) but somewhere in all that supportiveness and all that knowledge that I am depending on other people to help me with things a 4 year old can do with very little problem it just feels selfish to say actually this is really hard. Actually I'm not ok, what is happening is not ok, what is going to happen is not ok, EDS is not ok and most of all it IS NOT FAIR. What did I do that was so wrong, why me, just why? And there just isn't any answer to that and even if there was do you think it would ever be a good enough reason to make you go, ah ok, I get it now, maybe it is ok after all because it's just not.
So this is me sinking, and grasping at anything that can possibly even begin to help me to stay afloat. And half a box of tissues and almost an hour later I have a rather daunting essay which I am sure I will regret deeply in the morning but right now it has achieved something. I am no longer having a panic attack, I am no longer crying and even if it's just for tonight it feels like floating may not be so hard after all.
I'm so sorry to dump all of this on you and please feel free to ignore it, delete it or file it under the insane ramblings of a sleep deprived panic having some kind of psychotic break (in fact I think this should go at the top of the message as well as a warning note)
I feel like I'm sinking and all I can do is rant very calmly in case I accidentally dislocate anything through massively dangerous acts like oh I don't know, breathing, or typing or scratching my head (that last one is a serious health risk I really would advise trying it any time soon!) I guess the one thing I do have left is my sense of humour, I have spent most of the day in a giant hoody with a picture of a zebra above 'sometimes I fall apart' it was either that or 'my joints go out more than I do!). Hey, what doesn't kill you makes you stronger right? Well iron men of the world look out cos there is a herd of zebras planning (a very slow, carefully choreographed-to avoid unnecessary jostling) stampede and you would not believe how strong we can be when we aren't sitting in bed at 1:45am trying to justify being upset about being a housebound 27year old in constant pain with a lifelong condition which can only deteriorate because forget about a cure when they haven't even figured out a treatment yet. Quite why I need to justify this rant (other than as a person who can touch type and has done it professionally for many years I am assuming this is a VERY long rant) I haven't quite figured out but there it is. Sometimes I fall apart, my joints go out more than I do and sometimes I feel like I'm sinking and have no idea who to turn to, not even for help or encouragement or advise but just to know that sometimes I feel like I'm sinking.
p.s. as I was about to hit post I noticed birds singing and the wind and rain that kept me company all night has turned into a clear blue sky. A very wise woman once told me that no matter how hard today is at a certain point it will end, the clock will strike midnight and another day is born with a whole world of possibilities (had to fit that happy moment in somewhere) Oh, and the names of the surgeons were changed although I am looking forward to the day I get to meet Mr Hand the hip specialist!
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