Hi all
First off, I’m not writing this for any sympathy- I guess I just want some advice and maybe some reassurance that things will get better. Though I’m not holding out much hope if I’m honest.
For those who don’t know me, I was diagnosed this August and I am now almost completely wheelchair bound, though can just about transfer myself. My speech has gone completely and I have swallowing difficulties and had a peg fitted last week which I’m not yet using though it may not be too long. I have absolutely no energy and by the time I’m dressed (with help) and downstairs I’m shattered.
I’m married to Sue and we’ve always been rock solid. But over the last week or so things have become pretty bad between us. She’s irritable and impatient with me and seems constantly angry. I’m not much better but I try not to get angry and/or cry because I have difficulty breathing which is scary, so I think I’m suppressing it and it’s manifesting itself as depression instead. We seem stuck in a cycle and can’t get our. I’m on anti depressants, as of 2 weeks ago, but there doesn’t seem to be any counselling available. Things are so bad my one reason for keeping on fighting is no longer there and I see very little point. I’m grieving for the life we were living which was simple but very, very happy - and now just a distant memory. My life now is miserable , to be blunt and no amount of people telling me to be positive it helping because sometimes you just can’t be.
With Sue by my side I feel I can face anything but with things as they are I feel completely hopeless. Has anyone been through something similar? Do you have any advice? I’m not one for self pity but I can honestly say I’ve never felt so low or so utterly helpless - & hopeless.
Thanks listening. Sorry for being so miserable.
Sarah xx
First off, I’m not writing this for any sympathy- I guess I just want some advice and maybe some reassurance that things will get better. Though I’m not holding out much hope if I’m honest.
For those who don’t know me, I was diagnosed this August and I am now almost completely wheelchair bound, though can just about transfer myself. My speech has gone completely and I have swallowing difficulties and had a peg fitted last week which I’m not yet using though it may not be too long. I have absolutely no energy and by the time I’m dressed (with help) and downstairs I’m shattered.
I’m married to Sue and we’ve always been rock solid. But over the last week or so things have become pretty bad between us. She’s irritable and impatient with me and seems constantly angry. I’m not much better but I try not to get angry and/or cry because I have difficulty breathing which is scary, so I think I’m suppressing it and it’s manifesting itself as depression instead. We seem stuck in a cycle and can’t get our. I’m on anti depressants, as of 2 weeks ago, but there doesn’t seem to be any counselling available. Things are so bad my one reason for keeping on fighting is no longer there and I see very little point. I’m grieving for the life we were living which was simple but very, very happy - and now just a distant memory. My life now is miserable , to be blunt and no amount of people telling me to be positive it helping because sometimes you just can’t be.
With Sue by my side I feel I can face anything but with things as they are I feel completely hopeless. Has anyone been through something similar? Do you have any advice? I’m not one for self pity but I can honestly say I’ve never felt so low or so utterly helpless - & hopeless.
Thanks listening. Sorry for being so miserable.
Sarah xx
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