My husband has been diagnosed with MS since 2009. The last recorded relapse that he has stayed with him over the last 5 years and he had now progressed to secondary. He has extremely limited use of the right side of his body now and need support constantly. He is an amazing person and an absolute inspiration to everyone that meets him. If only I could bottle up his positivity and distribute it amongst others. Our family have coped very well with everything although we have our ups and downs, on a whole we managed. I feel that recently I have been struggling to cope, we have three children, that have their own things going on and can prove very testing at the best of times, on top of everything we deal with. I’ve been struggling to hold everything together and am so emotional, I worry that I’m not doing good enough and even with all the support from our family i still feel so alone. I feel so guilty about everything, I feel like I can’t admit sometimes that I can’t cope because people expect so much of me. I usually handle everything so well. I just wt to know if it’s common for people to feel so useless and guilty all the time and any advice that can help me snap out of it.Our 14 year old son has been really struggling lately too and I wondered if it would be wise to get us both some counseling because we have never really dealt with the impact the diagnoses had on our whole family. We’ve always concentrated on my hubby and what we can do to make him better. I really appreciate and welcome any advice.
You say that you have feelings of guilt, inadequacy and loneliness so it seems to me that you need to talk. Start with your husband, if he is so inspirational to everyone else then he should be able to handle some straight talking from his wife.
Tell him how you feel and never mind about bottling up his positivity, you should think about the negativity that you are bottling up.
I have had MS for nearly ten years and my wife is my carer but we still have a marriage which needs give and take, understanding and, above all, honesty. If your husband doesn’t know how his MS affects you then how can you expect him to give the love and support that you need.
You need to feel that love and support to feel that what you are doing is good enough. (I doubt if anyone expects you to do more!)
Please stay with the forum for as long as you want. There are others here who can offer their perspective and the benefit of their experience.
One thing is certain, you are not alone here.
You actually sound like you’re doing incredibly well.
Dealing with MS when it has affected your whole family as much as it has isn’t easy. Not for him, you, your children or the rest of the family.
It’s not surprising that sometimes you feel like you can’t cope. And it’s also not surprising that your children are affected by the whole family dynamic.
What Anthony says is excellent advice, be honest with your husband about how you feel. Let him know that you’re struggling. It is very often easier to be the person with MS than the carer / partner. And you are not only caring for him, you are bringing up children too.
And if your husband is truly amazing, he will help. Just by understanding. And by giving you the same emotional support you are providing to the entire family. If he is amazing, he will already know.
If you see your GP, you could see if there is some counselling you could have sorted out for you and for your son.
Meanwhile, give yourself some slack, from what you say, you are doing a brilliant job. You have no need to feel guilty that sometimes it’s all a bit much for you. Sometimes it’s all a bit much for everyone involved with the needs of a person with Advanced MS (often a more useful way of describing MS that has affected someone quite profoundly). At times it must be awful to be the son of a man this disabled. When children deserve a Dad who can do things with them. Especially teenaged boys. When a wife deserves a partner who is able to take on his share of family life. Not just the bringing in money, doing the housework, taking the family out and having fun, but a share of the emotional side of life too. And a man who can even just metaphorically put his arms around you and tell you you’re doing fine.
Hi! Thank you both for your advice. Don’t get me wrong, he is so supportive to me too and does so much too. I thought that id try talking to someone about how I feel and thought that I never actually triespeakimg to other people in our situation or similar. I think I will seek advice on counseling, but our gps are not always very supportive. I may search elsewhere. I really appreciate your replys and wish you well x