Hi all
I was diagnosed 2 months ago & on the whole, my wife and I have handled it reasonably well, staying as positive and cheerful as possible. I’m fairly accepting of it and appreciate these things are random so don’t feel overly resentful or angry. Just very, very sad that I can’t live the life I wanted and had planned with my wife and 2 dogs.
Until recently I’ve been able to get about ok, albeit slowly and with assistance. But literally in the last 2 weeks or so it’s become a whole lot harder. Every step is an effort and my legs and arms, whilst they’ve been weak for a while, now feel very, very heavy. All I really feel like doing is sitting most of the day and if I have to get up for a bit, even to just go to the loo or go upstairs, I then need to recover.
I HATE feeling like this. I’m becoming lazy, but feel I’ve little choice sometimes. Yet I hate seeing my wife have to take on so much . She does so gladly but I’ve always tried to do whatever I can, and now I just feel so damn physically exhausted all the time. I’m worried I’ll start putting off going out or living a normal(ish) life. I’ve had bouts like this briefly before but then given myself a stern talking to & pulled myself out of it. You hear of people who keep going no matter what, and I’d like to be one of those people, but how much do you push yourself - and how much do you listen to your body? To make matters worse, my speech is a lot worse too and can only slur 2-3 (largel incomprehensible) syllables at a time.
I also fear, of course (especially given the speed with which I’ve deteriorated), it’s the beginning of the end.
Does anyone have any tips or encouragement or anything to give me some hope and motivation? I have mobility aids etc, it’s more the emotional advice I need really.
Sorry to be so negative. As I say, I’m generally very positive with a healthy sense of humour and I’m sure i just need to adjust to it - again. It seems a never ending series of adjustments at times!
Sarah xx
I was diagnosed 2 months ago & on the whole, my wife and I have handled it reasonably well, staying as positive and cheerful as possible. I’m fairly accepting of it and appreciate these things are random so don’t feel overly resentful or angry. Just very, very sad that I can’t live the life I wanted and had planned with my wife and 2 dogs.
Until recently I’ve been able to get about ok, albeit slowly and with assistance. But literally in the last 2 weeks or so it’s become a whole lot harder. Every step is an effort and my legs and arms, whilst they’ve been weak for a while, now feel very, very heavy. All I really feel like doing is sitting most of the day and if I have to get up for a bit, even to just go to the loo or go upstairs, I then need to recover.
I HATE feeling like this. I’m becoming lazy, but feel I’ve little choice sometimes. Yet I hate seeing my wife have to take on so much . She does so gladly but I’ve always tried to do whatever I can, and now I just feel so damn physically exhausted all the time. I’m worried I’ll start putting off going out or living a normal(ish) life. I’ve had bouts like this briefly before but then given myself a stern talking to & pulled myself out of it. You hear of people who keep going no matter what, and I’d like to be one of those people, but how much do you push yourself - and how much do you listen to your body? To make matters worse, my speech is a lot worse too and can only slur 2-3 (largel incomprehensible) syllables at a time.
I also fear, of course (especially given the speed with which I’ve deteriorated), it’s the beginning of the end.
Does anyone have any tips or encouragement or anything to give me some hope and motivation? I have mobility aids etc, it’s more the emotional advice I need really.
Sorry to be so negative. As I say, I’m generally very positive with a healthy sense of humour and I’m sure i just need to adjust to it - again. It seems a never ending series of adjustments at times!
Sarah xx
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