I am a few years older than yourself and my husband was diagonised with MS in his twenties which like yourself, I was aware of when i married him 10 years ago.
MS affects each patient differently and I too have had a fair few problems but mine have been with both the emotional and physical effect it has on both of us and seeing how he has gone from an extremely active person (number 1-2 seed in squash at Unni) to barely walking has been very hard to deal with. He has not ventured out for 4 months now and only when I take him out - usually to go shopping. However, I have been extremely fortunate that my husband has been able to keep a lid on his 'mood swings' (a bit like PMS except it can be a lot worse as I am sure you are experiencing).
Family have not been supportive where they have tended to lecture rather than actually physically help with anything and I too have felt very isolated for over 6-8 months but have managed to get out of this on my own by focusing on other things to keep my mind off the situation and the 'living each day at a time and not really thinking too much into the future'.
I have found speaking with other MS patients through the MS Society and MS Trust, forums, and especially his MS nurse has been invaluable and would urge you to go to your GP and mention this. They will put you in contact with an MS team who will be able to assess and provide some support.
Having said all this, I did right at the beginning agree with my husband that I will be with him and look after him as long as he can keep a lid on his mood swings. Luckily he has and he too has not been working for nearly 3 years now, can be very tight even though he is not paying for anything now and yes, there is hardly any financial help for this with the exception of Disability Living Allowance where you can get a little help to aid with trying to live at home together.
Your situation does sound really bad, and I would urge you also to confide in your family too. I feel if I was in your shoes and I have known my husband for over 21 years, I would leave him. I know this sounds cruel but I really do understand what you are going through and you really cannot do this alone. Afterall, no one really asks after the carer, and MS not only effects the person who has it, it has a real impact on his/her spouse. Even though I too knew he had MS, it was nothing compared to how he is now, and it is only going to get worse. I know this sounds really negative, but unfortunately, living with MS has taught me that.
I wish you all the best and please do not feel guilty at all. Afterall, I know wedding vows were made and I am very serious about mine too but I have come accross some very difficult MS patients too and know I could not do all the things I do for my husband if he was so bitter. It does not help him nor anyone around him. Try mentioning this to him as it feels as if he is still in denyal.
Comment Reply
Hi there
I am a few years older than yourself and my husband was diagonised with MS in his twenties which like yourself, I was aware of when i married him 10 years ago.
MS affects each patient differently and I too have had a fair few problems but mine have been with both the emotional and physical effect it has on both of us and seeing how he has gone from an extremely active person (number 1-2 seed in squash at Unni) to barely walking has been very hard to deal with. He has not ventured out for 4 months now and only when I take him out - usually to go shopping. However, I have been extremely fortunate that my husband has been able to keep a lid on his 'mood swings' (a bit like PMS except it can be a lot worse as I am sure you are experiencing).
Family have not been supportive where they have tended to lecture rather than actually physically help with anything and I too have felt very isolated for over 6-8 months but have managed to get out of this on my own by focusing on other things to keep my mind off the situation and the 'living each day at a time and not really thinking too much into the future'.
I have found speaking with other MS patients through the MS Society and MS Trust, forums, and especially his MS nurse has been invaluable and would urge you to go to your GP and mention this. They will put you in contact with an MS team who will be able to assess and provide some support.
Having said all this, I did right at the beginning agree with my husband that I will be with him and look after him as long as he can keep a lid on his mood swings. Luckily he has and he too has not been working for nearly 3 years now, can be very tight even though he is not paying for anything now and yes, there is hardly any financial help for this with the exception of Disability Living Allowance where you can get a little help to aid with trying to live at home together.
Your situation does sound really bad, and I would urge you also to confide in your family too. I feel if I was in your shoes and I have known my husband for over 21 years, I would leave him. I know this sounds cruel but I really do understand what you are going through and you really cannot do this alone. Afterall, no one really asks after the carer, and MS not only effects the person who has it, it has a real impact on his/her spouse. Even though I too knew he had MS, it was nothing compared to how he is now, and it is only going to get worse. I know this sounds really negative, but unfortunately, living with MS has taught me that.
I wish you all the best and please do not feel guilty at all. Afterall, I know wedding vows were made and I am very serious about mine too but I have come accross some very difficult MS patients too and know I could not do all the things I do for my husband if he was so bitter. It does not help him nor anyone around him. Try mentioning this to him as it feels as if he is still in denyal.
July 25, 2011 - 3:20amThis Comment
Reply