affected
Guru status reached
- Joined
- Apr 26, 2013
- Messages
- 16,096
- Reason
- Lost a loved one
- Diagnosis
- 05/2013
- Country
- OZ
- State
- AU
- City
- lala land
Hi everyone
I've been reading the forum for a little while and been reluctant to say anything yet as the whole situation is so turbulent and I know you all understand this.
My PAL is a member of the forum tho has not posted much only an introduction really a while back but I'm keen to maintain some privacy for myself so that I can say anything about how things are for me, and this has been my main reason for reading only but not contributing. I am concerned that my PAL may read something I post and take offence, as the situation is one where I am told constantly that I must share how I feel, but if I do, I receive an intensely angry reaction, even to the point of comments such as "you don't even know what vulnerable is" or "oh you are such a martyr!:. So I am happy if anyone wants to post privately so that I can feel I can say how I am really doing without disclosing details that would inflame the situation here.
My PAL was recently diagnosed and has bulbar and upper limb effects that are distressing to the both of us and seem very rapid, though reading other stories we know that they are not as rapidly progressing as some people experience.
We finally got a diagnosis after a long process that was distressing being in limbo whilst suspecting that ALS would be the diagnosis but hoping that something less serious would be found.
I know that in the end I have to carry this myself, but I just have to say something because even though I have some great support through family and friends, everyone is 'connected' to the situation and I am hoping to start some counselling soon to have that disconnected support, but tonight I am, well, more than a little distraught.
The worst is yet to come, my PAL is still quite physically able as he is not working and so can do things at a slow pace, but his swallow reflex is frightening as it can't deteriorate much further and he is going to need a PEG very soon, and his hands/arms are deteriorating so we know that sometime in the future, and maybe not too far in the future he is heading towards needing a high level of care/assistance.
We are facing some life changing decisions to put ourselves in a position to cope with the effects of the disease now and what the next 6 -12 months will hold for us, and this is stressful, but it's the reactions from my PAL that is the most distressful. I find that I spend so much energy trying to 'do' everything right and we can have weeks where our relationship is good because i manage that, but then like today, one 'slip' by me and all hell breaks loose and he accuses me of things that are just so far wrong, and any attempt then by me to explain the situation and how I am feeling ends with him yelling (which means he becomes totally incomprehensible which inflames things more) at me and I feel like I am totally failing at giving him the support he needs and deserves.
So what do I want here? I guess a way to privately communicate with someone/s, and a public way to talk about the day to day stuff if I can do that without inflaming my situation.
I have been so inspired by some posts I have read here, and also my distress and apprehension at what is yet to come by some posts, but I refuse to let that get on top of me, we take a day at a time and try to stay as positive as possible.
But you know, there are some days when I wonder how I can cope even another single day, and this is one of them. Hopefully tomorrow will be another better day and I will know again that I can do this.
I've been reading the forum for a little while and been reluctant to say anything yet as the whole situation is so turbulent and I know you all understand this.
My PAL is a member of the forum tho has not posted much only an introduction really a while back but I'm keen to maintain some privacy for myself so that I can say anything about how things are for me, and this has been my main reason for reading only but not contributing. I am concerned that my PAL may read something I post and take offence, as the situation is one where I am told constantly that I must share how I feel, but if I do, I receive an intensely angry reaction, even to the point of comments such as "you don't even know what vulnerable is" or "oh you are such a martyr!:. So I am happy if anyone wants to post privately so that I can feel I can say how I am really doing without disclosing details that would inflame the situation here.
My PAL was recently diagnosed and has bulbar and upper limb effects that are distressing to the both of us and seem very rapid, though reading other stories we know that they are not as rapidly progressing as some people experience.
We finally got a diagnosis after a long process that was distressing being in limbo whilst suspecting that ALS would be the diagnosis but hoping that something less serious would be found.
I know that in the end I have to carry this myself, but I just have to say something because even though I have some great support through family and friends, everyone is 'connected' to the situation and I am hoping to start some counselling soon to have that disconnected support, but tonight I am, well, more than a little distraught.
The worst is yet to come, my PAL is still quite physically able as he is not working and so can do things at a slow pace, but his swallow reflex is frightening as it can't deteriorate much further and he is going to need a PEG very soon, and his hands/arms are deteriorating so we know that sometime in the future, and maybe not too far in the future he is heading towards needing a high level of care/assistance.
We are facing some life changing decisions to put ourselves in a position to cope with the effects of the disease now and what the next 6 -12 months will hold for us, and this is stressful, but it's the reactions from my PAL that is the most distressful. I find that I spend so much energy trying to 'do' everything right and we can have weeks where our relationship is good because i manage that, but then like today, one 'slip' by me and all hell breaks loose and he accuses me of things that are just so far wrong, and any attempt then by me to explain the situation and how I am feeling ends with him yelling (which means he becomes totally incomprehensible which inflames things more) at me and I feel like I am totally failing at giving him the support he needs and deserves.
So what do I want here? I guess a way to privately communicate with someone/s, and a public way to talk about the day to day stuff if I can do that without inflaming my situation.
I have been so inspired by some posts I have read here, and also my distress and apprehension at what is yet to come by some posts, but I refuse to let that get on top of me, we take a day at a time and try to stay as positive as possible.
But you know, there are some days when I wonder how I can cope even another single day, and this is one of them. Hopefully tomorrow will be another better day and I will know again that I can do this.
