Post by fruity on Oct 16, 2013 3:55:53 GMT
Hi Im still here although at times it seems like only just here!
I think last time I was here I had just being diagnosed with Ehlers Danlos Syndrome which has got worse in the last few years a lot worse. I also now recently finally found out for definite that I do have Chiari Malformation 1 which I also suspected for the last 3 + years now. Its really got bad the last cpl weeks and although I have had a few occasions now where I felt like I was gonna die I have somehow came back from it luckily but stuff like this is getting a lot worse all the time.
I really need an operation for this, there is only one treatment and thats brain surgery which I am desperate for but also terrified of but its the only possibility but because of the Ehlers Danlos Syndrome and the type of Chiari Malformation is hard to treat I dont even know if I will be given this option at all.
So it seems to me like I honestly dont know how much longer I will even be around for. I hope its a while yet cause I dont want to die at all but right now I am struggling with this a lot, would appreciate any help at all. I havent practiced reiki on myself at all for a while now tbh most days are a struggle just to get by and do the very basics to survive and even that is dwindling now. I guess when your times up your times up and theres just some things you cant change, if this is the case rather than getting an op I would like to go as peacefully as possible and without too much pain. Even though I experience terrible pain in a daily basis I am terrified that it might get worse.
Aside from all this I also am worried about my daughter Toni who is now 19 she also has EDS too and is also showing signs of Chiari Malformation.
I feel like we both need an actual miracle although am not sure if I even believe in miracles but I think considering how things are we both still manage to keep upbeat but at the same time we need to be realistic about what the future might hold. I think it might be a bit easier to accept that if there was the possibility of being able to actually live the rest of what time we have to the fullest but even that seems impossible because of the pain being so bad and all the other symptoms that go with it.
I really feel like I should be putting my affairs in order because of the way things are happening but I know that in a way deep down that Im scared to do this because I am struggling to face that and also I think some part of me thinks that maybe by delaying this stuff that it might help me hang on in here a bit longer but in reality things don't really work out the way you want especially when it comes to health and mortality. I havent given up but am trying to accept the inevitable. I think I just always hoped I would be able to achieve more with my life and am scared if I dont get to do all or even some of the things I wanted to do these days. Theres already loads of stuff I have accepted will never happen and I am fine with that.
Arrggh why does life have to be so complicated, it would be so nice and appreciated greatly if it could maybe go a bit better at least for a while, aside from all the health stuff being on disability benefits and not even the ones we should be getting we are financially knackered so on top of being sick theres always the stresses of finances too. I know I probably sound like I could be a bit more grateful and I really am, am grateful at least for all the things I have been able to do and am glad I done some of the more crazy stuff I did when I could. I would like to hope that my daughter could also have her own fair share of experiences in life, even some but its also hit her pretty hard too. I am worried for her when I am not here anymore because its already hard enough as it is to get help or even a lot of the time support from family although things are a bit better with regards to that.
Anyhoo sorry for the big long post. I really do hope that all are doing well here on the board and wish you all the bestxx
I think last time I was here I had just being diagnosed with Ehlers Danlos Syndrome which has got worse in the last few years a lot worse. I also now recently finally found out for definite that I do have Chiari Malformation 1 which I also suspected for the last 3 + years now. Its really got bad the last cpl weeks and although I have had a few occasions now where I felt like I was gonna die I have somehow came back from it luckily but stuff like this is getting a lot worse all the time.
I really need an operation for this, there is only one treatment and thats brain surgery which I am desperate for but also terrified of but its the only possibility but because of the Ehlers Danlos Syndrome and the type of Chiari Malformation is hard to treat I dont even know if I will be given this option at all.
So it seems to me like I honestly dont know how much longer I will even be around for. I hope its a while yet cause I dont want to die at all but right now I am struggling with this a lot, would appreciate any help at all. I havent practiced reiki on myself at all for a while now tbh most days are a struggle just to get by and do the very basics to survive and even that is dwindling now. I guess when your times up your times up and theres just some things you cant change, if this is the case rather than getting an op I would like to go as peacefully as possible and without too much pain. Even though I experience terrible pain in a daily basis I am terrified that it might get worse.
Aside from all this I also am worried about my daughter Toni who is now 19 she also has EDS too and is also showing signs of Chiari Malformation.
I feel like we both need an actual miracle although am not sure if I even believe in miracles but I think considering how things are we both still manage to keep upbeat but at the same time we need to be realistic about what the future might hold. I think it might be a bit easier to accept that if there was the possibility of being able to actually live the rest of what time we have to the fullest but even that seems impossible because of the pain being so bad and all the other symptoms that go with it.
I really feel like I should be putting my affairs in order because of the way things are happening but I know that in a way deep down that Im scared to do this because I am struggling to face that and also I think some part of me thinks that maybe by delaying this stuff that it might help me hang on in here a bit longer but in reality things don't really work out the way you want especially when it comes to health and mortality. I havent given up but am trying to accept the inevitable. I think I just always hoped I would be able to achieve more with my life and am scared if I dont get to do all or even some of the things I wanted to do these days. Theres already loads of stuff I have accepted will never happen and I am fine with that.
Arrggh why does life have to be so complicated, it would be so nice and appreciated greatly if it could maybe go a bit better at least for a while, aside from all the health stuff being on disability benefits and not even the ones we should be getting we are financially knackered so on top of being sick theres always the stresses of finances too. I know I probably sound like I could be a bit more grateful and I really am, am grateful at least for all the things I have been able to do and am glad I done some of the more crazy stuff I did when I could. I would like to hope that my daughter could also have her own fair share of experiences in life, even some but its also hit her pretty hard too. I am worried for her when I am not here anymore because its already hard enough as it is to get help or even a lot of the time support from family although things are a bit better with regards to that.
Anyhoo sorry for the big long post. I really do hope that all are doing well here on the board and wish you all the bestxx