Struggling To Cope With My Husband’s Disabilities

AltMom1999

Hello!

My husband has been disabled for just over a year now. It started when he had multiple chest infections within 4 months which lead to Pneumonia. He never fully recovered, and after seeing a Neurologist last week, they have now diagnosed him with MS. We have a 2 1/2 year old daughter and this all came about last year.

He needs a wheelchair for prolonged periods out of our flat, uses a crutch to support his walking of short distances and takes an abundance of medication. He has lots of nights where he cannot sleep due to body spasms and pain which lead him to sleeping on the sofa to avoid disturbing me.
We’ve been talking alot lately about what this means for our future including how he will only deteriorate from here, the possibility of never having another child and how we will cope financially when he gets to the point where I can no longer be in work in order to be his carer.

Being 100% honest, I’m terrified and struggling to come to terms with everything. It’s making me question everything. The birth of our daughter was extremely traumatic and another baby was not only something we both wanted, but I felt I needed to heal so that not happening has really brought me down. The things and places we may never get to see/do makes me feel like we’re going to be housebound forever.

I feel awful for saying this, and call me an AH for feeling like this, but I really don’t know if I can do it. I love him so much, but we’re only 26 and 29. We had so much planned which we won’t get anymore. I already struggle to manage a toddler and his disabilities on his bad days. I’m finding myself barely spending time at home, feeling cold towards people and feeling very alone. Everyone is saying to be grateful for what we have, but I’m grieving the life we will never have.

Does anyone have any advice for coming to terms with all of this? Or has anyone else felt like they couldn’t carry on? I don’t want to be the wife who left her disabled husband, but I also don’t want to spend the rest of my life feeling unfulfilled and miserable.

Sorry for the lengthy post, just need someone to talk to who won’t judge me.

Bluebell21

Hello @AltMom1999 welcome to the Community.

It is very early days for you to come to terms with your husband's diagnosis of MS if you only found out last week.

You will still be in shock and feeling overwhelmed.

There is some information about MS in the following link.

https://www.mssociety.org.uk

No one will judge you on the forum and it is a safe place for you to talk.

There will be more staff on tomorrow and I am sure they will reply to your post.

Please take care of yourself.

westpest

hello @AltMom1999

Firstly I have to say I felt and do feel the same at times. It’s not easy when you’re loved one is taken ill. In some ways you have to go through what is similar to a bereavement process. So you’ll go through different stages of denial, anger, bargaining, depression and eventually acceptance. I think most of us on here will totally understand what you are going through. It’s made even harder because you had so many plans and by you having a toddler. It must be so scary for you but you need to reach out to family and friends. There are groups that support carers. The one that helps me is “connecting carers”. Craft groups are run online to give us a break from caring. It also gives us chance to speak to other carers and share ideas. They also run counselling sessions on a one to one basis. When my husband was first diagnosed I didn’t see the point of connecting them. After about a year I was introduced to them and I have to admit they are literally a life saver. I am really sorry that you are going through this but know for me the people from Scope are extremely supportive and understanding. Also don’t be afraid of speaking to your Doctor about how you feel. You absolutely are not judged, reaching out is the best thing to do as bottling things up will not help you or your husband. You are more than welcome to message me. Sending you lots of hugs. Don’t forget what you are feeling is perfectly normal

Take care xx

SheffieldMan1976

I don't really know what to tell you to do love, you don't want to be forced to stay with him out of duty, but you need to live your own life… With regard to the Pneumonia, back in the late 70s I was in Sheffield Children's Hospital for about 9 months with that, so I know what it's like, 47 years later I'm still VERY prone to colds and even the Flu despite having a Flu jab every year.