Just added a list of my symptoms on the sidebar to the right.
Lately i've been straining myself way above the guidelines i've set up for myself and what's good for me and have been skipping my exercise schedule due to many things. Mostly i've had less energy to spare due to the unstable situation at home as well as an increased usage of the computer. I really need to take control of this again as that exercise schedule is most likely a huge part of why i've made it this far in the first place, balancing the fact that exercise actually makes my symptoms and overall condition much worse and the fact that some parts of my body need the exercise not to deteriate as well as to avoid muscle atrophy. It's a fine line and like i mentioned, the reason why i've made it this far is most likely a large part due to the fact that i've found a really great system - something that healthcare should've provided me with me with a long time ago, but all i received was disbelief and misguided [and sometimes very physically abusive] cognitive treatments. Which is why my condition was allowed to become as severe as it has. If there ever were any chance of me just "resting" this away, it's long gone now. Long gone. With ME/CFS it is Crucial to get diagnosed as early in as possible to avoid having the patient going through what i had to, severly damaging the rehabilitation process. Problem is, as ME/CFS still isn't taken completely seriously by doctors, even if you do get diagnosed early, that doesn't automatically mean you'll get help. Sad but true.
Later.
Thursday, September 27, 2007
Interesting research update
Hey guys, just thought i'd sneak this in, something very interesting that i found a link to.
http://www.immunesupport.com/library/showarticle.cfm?id=8337&T=CFIDS_FM&B1=EM091907C
As it's widely known, ME/CFS seem to have different causing/triggering factors from induvidual to induvidual but if these research findings can be verified etc, this could mean they've found a possible causing factor for what could be the majority of us as i figure it. What's not to forget, is that we've been trough this before though. Many times. So whenever a new research find is publsihed, i always take it with a grain of salt and wait to see what becomes of it. I remember earlier on in my illness, as soon as someone even hinted at there being a possible "cure" or new research finding that would most likely lead to one, i always got all riled up - seeing me just walking out of there out into health and being able to take my life back. Well, that was a long time ago and i now know better. I've come to rely only on myself for the "cure", which has been to listen to my body when it clearly shows me what it needs as well as a cocktail of high doses of Q-10 amongst others. I'll go into that a bit later though.
I never did that you see, listen to my body that is. I got in to the whole gym scene at 14 - wanting to become a body builder a bit to young perhaps, working out hard 5 days a week for up to 4 hours a day, not quite understanding that my body needed rest as well. It was about from the time i was 14 that i started having these continuous colds that ended up lasting a lot longer then what i was normally used to. Most likely, that period of extreme strain on my body, triggered all of this. But triggered what? I almost died in a herpes infection breakout when i was two years old and my life apparently hung on a thin thread. They had apparently never seen a case that bad in Sweden to that date and documented me into their files for research purposes i am told. Obviously i made it through, but every time i get a cold, i also get the oral herpes blisters on my tongue and sores on the edges of either side of my mouth. Sometimes it feels like the herpes is/was behind it all and was keeping my immune system so strained, coupled with my extreme physical exercise, that it eventually lead to this.
Speaking (typing?) of colds - also, as this below article touches upon, getting a cold is one of your worst enemies when you have ME/CFS as it often leads to a relapse and ruins what little progress you've achieved in your journey to what is hopefully better health. Some good reading, check it out.
http://www.immunesupport.com/library/showarticle.cfm/ID/8367
I have no illusions of me being able to keep up with all the current and future ME related research and posting it in this Blog, but i will however post any findings i might come across if interesting enough. There are plenty of places like the ones that are represented in the link section up to your right that fill that need a hell of a lot better then i ever could :-)
Later.
http://www.immunesupport.com/library/showarticle.cfm?id=8337&T=CFIDS_FM&B1=EM091907C
As it's widely known, ME/CFS seem to have different causing/triggering factors from induvidual to induvidual but if these research findings can be verified etc, this could mean they've found a possible causing factor for what could be the majority of us as i figure it. What's not to forget, is that we've been trough this before though. Many times. So whenever a new research find is publsihed, i always take it with a grain of salt and wait to see what becomes of it. I remember earlier on in my illness, as soon as someone even hinted at there being a possible "cure" or new research finding that would most likely lead to one, i always got all riled up - seeing me just walking out of there out into health and being able to take my life back. Well, that was a long time ago and i now know better. I've come to rely only on myself for the "cure", which has been to listen to my body when it clearly shows me what it needs as well as a cocktail of high doses of Q-10 amongst others. I'll go into that a bit later though.
I never did that you see, listen to my body that is. I got in to the whole gym scene at 14 - wanting to become a body builder a bit to young perhaps, working out hard 5 days a week for up to 4 hours a day, not quite understanding that my body needed rest as well. It was about from the time i was 14 that i started having these continuous colds that ended up lasting a lot longer then what i was normally used to. Most likely, that period of extreme strain on my body, triggered all of this. But triggered what? I almost died in a herpes infection breakout when i was two years old and my life apparently hung on a thin thread. They had apparently never seen a case that bad in Sweden to that date and documented me into their files for research purposes i am told. Obviously i made it through, but every time i get a cold, i also get the oral herpes blisters on my tongue and sores on the edges of either side of my mouth. Sometimes it feels like the herpes is/was behind it all and was keeping my immune system so strained, coupled with my extreme physical exercise, that it eventually lead to this.
Speaking (typing?) of colds - also, as this below article touches upon, getting a cold is one of your worst enemies when you have ME/CFS as it often leads to a relapse and ruins what little progress you've achieved in your journey to what is hopefully better health. Some good reading, check it out.
http://www.immunesupport.com/library/showarticle.cfm/ID/8367
I have no illusions of me being able to keep up with all the current and future ME related research and posting it in this Blog, but i will however post any findings i might come across if interesting enough. There are plenty of places like the ones that are represented in the link section up to your right that fill that need a hell of a lot better then i ever could :-)
Later.
Wednesday, September 26, 2007
Current situation explained
Things are not well at home. Haven is a word i do not know, nor do i know the words home and peace when put together anymore. It's a long story, the one about me ending up back at the house where i once grew up, with my mother as my caretaker/nurse/personal assistant and a story that i will share with you one Blog entry at a time. Just thinking about starting a single text to tell the whole story in one single Blog entry, gives me nightmares. It's just not doable, at least not without mushing it up into a senseless piece of jibber jabber anyhow. I wouldn't be able to concentrate enough to know what i'd already written/told and what i hadn't. It's a story filled with a lot of pain, misery, mistakes and misguided attempts at helping and worthy to be told right and not in some rushed Blog entry in the middle of the night.
I'm having a hard time deciding on in what structure i should tell the story, but you'll just have to bare with me as i start in this Blog entry and hopefully i'll be able to not mush everything together to much.
The present.
I live with my mother. I have my own room on the top floor out of two floors and i've hardly ever left it since i came home from those horrible years of bouncing around within the Swedish healthcare machine. Conclusion? The machine is broken. Oh, it's still running that's for sure, but it sure isn't going where it's supposed to.
Well, back to the present. I eat, sleep, wash and do my "bathroom" visits in the confines of my bed. I've even had a custom desk made that hold my computer and can roll over my bed so that i can manage to have some contact with the outside world. I can guarantee you one thing; if i ever get to leave this bed and get through all of this, i'll sleep on the floor for the rest of my life. I hate beds. One is my prison. I know, my prison is my illness, but i see the bed as the symbol of my imprisonment - ergo i hate beds. The room has gotten smaller for each year that has passed and soon it'll squash me if i do not find a way to leave. Leaving, however, is a hell of a lot harder then it sounds. For me at least. You see, i can't just stand up and walk away when confronted with a situation that's not to my liking or has a negative effect on my health. I can do nothing but lay there and take it head-on. May it have been insults, physical or mental abuse during my bouncing around in Swedish healthcare or just the plain old frustration of hearing young healthy people my age having the time of their lives outside while i'm stuck in here, in the ever shrinking room. This causes a problem when trying to "stand on your own legs" (not sure if pun was intended, let me think about it) as you have no income to speak of save for the minimum living standard money they pay out to people like me who for one reason or another had to "retire" early but in my case i got sick so young that i never had a chance to make enough money to actually get something even remotely impressive (to say the very least) out of that early retirement. For situations like mine, handicapped person seeking own living quarters, the part of the state where you live in is obligated to provide you with a handicap-adjusted apartment. Well, that too isn't as easy and a sure of a thing as it may sound. Just like everything in my life since i got sick.
The LSS staff (LSS = Law about Support and Service here in Sweden, but let's call them "it's-their-job-to-inform-me-of-what-rights-and-options-i-have-in-all-of-this guides") in the part of the state where i live that are assigned to me do not quite seem to see it fit to prioritize a 23 year young man over 80 year old men when it comes to assigning the handicap-adjusted apartments they have. I'm not saying i think i'm more "worthy" of an apartment then said older gentlemen, but when they string me along with excuses for months and months (and months), saying they're doing everything they can for me only to see that they're in fact skipping me for some mysterious reason and giving them to...said older gentlemen. Why? Well, after a string of communication with the LSS guides via email it seems that they are so economically comfortable with me living at home being "taken care" of by my mother and them because of that fact not having to hire multiple personal assistants (like they would have to if i moved to live on my own), that they are actually skipping me on purpose. Of course they didn't say that out loud, but it doesn't take a genius to figure that out. Especially after receiving answers both avoiding my questions and ducking them alltogether. They're just not interested in helping me out in that department, despite me having thoroughly explained to them that the situation for both me AND my mother is unacceptable to say the very least with my already rocky health deteriorating as a direct result to the unstable situation at home. What said "unstable situation" referrs to, is an incredibly strained relationship between me and my mother developed from having had a very much other-then mother-son relationship with her during all these years of personal hell. She's been with me every step, whether it's been to my misfortune or later on in all of this, my fortune - she's been there, having gone through a lot of hard times her self. Why misfortune, you say? Well, that's another part of the story as we're currently in present times still and i wouldn't want to mush up the story now would i.
Back to the LSS people. They just do not see how a 23 year young (and i say young to illustrate a point, but i guess you've fiured that out already) man could be worth aaaaall that effort to give him a chance at life in comparison to the elderly that REALLY need those handicap-adjusted apartments. Hey, forget the moral obligation here, it's their JOBS to help me out with a shot at at least a decent life whether i'm to...young?! or not. Jesus H Chist and his discipl...well you get the point. Has the world gone mad or is it just that you see all that's wrong with it when you need it's help, it's humbleness and love? Well, either way i'm in for a doozy...again. The fun never ends.
Over and out for now, take care of yourselves and please, for cryin' out loud, enjoy the little things in life like just being able to jump out of bed in the morning and straight into a shower. Oh god i miss showers. Running water on me. And the sun in my face. And walking. You gotta love how being in a situation like this, all robbed of the things you oh so took for granted, puts things in perspective. If i ever get out of this, you can rest assured i'll do my very best to try and not take the precious gift of life for granted. As it is now, that's somewhat hard and many times when having been all alone in the healthcare machine have i wished myself no longer due to experiences with the combination of severe pain and a total disregard for treating another human being with respect as well as dignity. There'll be many horror stories in this Blog, that's for sure.
Money? Popularity? Finding the one true love? Sure, those are nice, but i think i'd rather have my health.
Later.
I'm having a hard time deciding on in what structure i should tell the story, but you'll just have to bare with me as i start in this Blog entry and hopefully i'll be able to not mush everything together to much.
The present.
I live with my mother. I have my own room on the top floor out of two floors and i've hardly ever left it since i came home from those horrible years of bouncing around within the Swedish healthcare machine. Conclusion? The machine is broken. Oh, it's still running that's for sure, but it sure isn't going where it's supposed to.
Well, back to the present. I eat, sleep, wash and do my "bathroom" visits in the confines of my bed. I've even had a custom desk made that hold my computer and can roll over my bed so that i can manage to have some contact with the outside world. I can guarantee you one thing; if i ever get to leave this bed and get through all of this, i'll sleep on the floor for the rest of my life. I hate beds. One is my prison. I know, my prison is my illness, but i see the bed as the symbol of my imprisonment - ergo i hate beds. The room has gotten smaller for each year that has passed and soon it'll squash me if i do not find a way to leave. Leaving, however, is a hell of a lot harder then it sounds. For me at least. You see, i can't just stand up and walk away when confronted with a situation that's not to my liking or has a negative effect on my health. I can do nothing but lay there and take it head-on. May it have been insults, physical or mental abuse during my bouncing around in Swedish healthcare or just the plain old frustration of hearing young healthy people my age having the time of their lives outside while i'm stuck in here, in the ever shrinking room. This causes a problem when trying to "stand on your own legs" (not sure if pun was intended, let me think about it) as you have no income to speak of save for the minimum living standard money they pay out to people like me who for one reason or another had to "retire" early but in my case i got sick so young that i never had a chance to make enough money to actually get something even remotely impressive (to say the very least) out of that early retirement. For situations like mine, handicapped person seeking own living quarters, the part of the state where you live in is obligated to provide you with a handicap-adjusted apartment. Well, that too isn't as easy and a sure of a thing as it may sound. Just like everything in my life since i got sick.
The LSS staff (LSS = Law about Support and Service here in Sweden, but let's call them "it's-their-job-to-inform-me-of-what-rights-and-options-i-have-in-all-of-this guides") in the part of the state where i live that are assigned to me do not quite seem to see it fit to prioritize a 23 year young man over 80 year old men when it comes to assigning the handicap-adjusted apartments they have. I'm not saying i think i'm more "worthy" of an apartment then said older gentlemen, but when they string me along with excuses for months and months (and months), saying they're doing everything they can for me only to see that they're in fact skipping me for some mysterious reason and giving them to...said older gentlemen. Why? Well, after a string of communication with the LSS guides via email it seems that they are so economically comfortable with me living at home being "taken care" of by my mother and them because of that fact not having to hire multiple personal assistants (like they would have to if i moved to live on my own), that they are actually skipping me on purpose. Of course they didn't say that out loud, but it doesn't take a genius to figure that out. Especially after receiving answers both avoiding my questions and ducking them alltogether. They're just not interested in helping me out in that department, despite me having thoroughly explained to them that the situation for both me AND my mother is unacceptable to say the very least with my already rocky health deteriorating as a direct result to the unstable situation at home. What said "unstable situation" referrs to, is an incredibly strained relationship between me and my mother developed from having had a very much other-then mother-son relationship with her during all these years of personal hell. She's been with me every step, whether it's been to my misfortune or later on in all of this, my fortune - she's been there, having gone through a lot of hard times her self. Why misfortune, you say? Well, that's another part of the story as we're currently in present times still and i wouldn't want to mush up the story now would i.
Back to the LSS people. They just do not see how a 23 year young (and i say young to illustrate a point, but i guess you've fiured that out already) man could be worth aaaaall that effort to give him a chance at life in comparison to the elderly that REALLY need those handicap-adjusted apartments. Hey, forget the moral obligation here, it's their JOBS to help me out with a shot at at least a decent life whether i'm to...young?! or not. Jesus H Chist and his discipl...well you get the point. Has the world gone mad or is it just that you see all that's wrong with it when you need it's help, it's humbleness and love? Well, either way i'm in for a doozy...again. The fun never ends.
Over and out for now, take care of yourselves and please, for cryin' out loud, enjoy the little things in life like just being able to jump out of bed in the morning and straight into a shower. Oh god i miss showers. Running water on me. And the sun in my face. And walking. You gotta love how being in a situation like this, all robbed of the things you oh so took for granted, puts things in perspective. If i ever get out of this, you can rest assured i'll do my very best to try and not take the precious gift of life for granted. As it is now, that's somewhat hard and many times when having been all alone in the healthcare machine have i wished myself no longer due to experiences with the combination of severe pain and a total disregard for treating another human being with respect as well as dignity. There'll be many horror stories in this Blog, that's for sure.
Money? Popularity? Finding the one true love? Sure, those are nice, but i think i'd rather have my health.
Later.
The very first entry...
The very first entry. Guess i'm quite nervous in a way seeing as the reason why i've managed to stay strong and survive this long most likely is due to the fact that i've been very good at not stopping to think to much about how tragic the situation really is and here i am - having created a Blog solely for the purpose of pondering and ultimately sharing these past 7 years with all of you. Nuts. Well, it has it's reason just like everything else in life. The reason being my need to get a few things off my chest and me more and more lately having felt the need for there to be some kind of record to leave behind in case of something happening to me.
I fell ill at the age of 16 and am now in my mid twenties. Even after all these years it seems i'm frighteningly worse off then most other ME patients i've heard of seeing as i'm still 100% tied to my bed as a direct result of me not receiving the proper care early on and in what is supposed to be healthCARE, i wrongfully ended up in the firm [and relentlessy narrow minded] grasp of the psychiatric sector having to fight for my life as well as my dignity and later on freedom. Literally. Am now left to fend for myself outside the world of so-called healthcare and am having to be my own doctor in most ways. It makes me sad when i think about that i lost what would have been some of the most exciting and wonderful years of my life. Senior high, College. Gone. Just like that. Sure, i'm "just 23 still", but If things do not drastically improve in my quest for better health, i do not know if i will make it out of this alive much due to the complications of having had to spend so many years in bed as well as the enormous strain my symptoms have on my body. However, i've made it this far and i'm not about to give up now. Especially since i've been making small progress what looks like due to the recommendation of certain medicine by the Professor that gave me my diagnosis. I'll provide further description as to what those are exactly, later on.
I am not looking for sympathy. Sympathy and pity can't help me. However, if something does happen to me, i want there to be a record of the fact that i excisted. That i lived. What i went through just to be able to wake up in the morning, only to have to spend the rest of the day in bed and in pain. Lost to the world, i need to get this off my chest.
This is my road. My journey. My life. My Blog.
P.S - Oh and if you're wondering what's up with the whole "A world between tables" thing - it's an expression often used to describe a patient's situation when he/she is being bounched around within healthcare with neither side wanting to take responsibility for the well being and care of the patient
I fell ill at the age of 16 and am now in my mid twenties. Even after all these years it seems i'm frighteningly worse off then most other ME patients i've heard of seeing as i'm still 100% tied to my bed as a direct result of me not receiving the proper care early on and in what is supposed to be healthCARE, i wrongfully ended up in the firm [and relentlessy narrow minded] grasp of the psychiatric sector having to fight for my life as well as my dignity and later on freedom. Literally. Am now left to fend for myself outside the world of so-called healthcare and am having to be my own doctor in most ways. It makes me sad when i think about that i lost what would have been some of the most exciting and wonderful years of my life. Senior high, College. Gone. Just like that. Sure, i'm "just 23 still", but If things do not drastically improve in my quest for better health, i do not know if i will make it out of this alive much due to the complications of having had to spend so many years in bed as well as the enormous strain my symptoms have on my body. However, i've made it this far and i'm not about to give up now. Especially since i've been making small progress what looks like due to the recommendation of certain medicine by the Professor that gave me my diagnosis. I'll provide further description as to what those are exactly, later on.
I am not looking for sympathy. Sympathy and pity can't help me. However, if something does happen to me, i want there to be a record of the fact that i excisted. That i lived. What i went through just to be able to wake up in the morning, only to have to spend the rest of the day in bed and in pain. Lost to the world, i need to get this off my chest.
This is my road. My journey. My life. My Blog.
P.S - Oh and if you're wondering what's up with the whole "A world between tables" thing - it's an expression often used to describe a patient's situation when he/she is being bounched around within healthcare with neither side wanting to take responsibility for the well being and care of the patient
Subscribe to:
Posts (Atom)