This is my first post on this or any other forum. I am newly diagnosed with CIS/probable MS (MRI showed lesions disseminated in space but not time, although that is expected to come with a follow-up MRI in a few months). At present, ironically given the gravity of the diagnosis, I have virtually no symptoms at all. I only went to the doctors as the (extremely minor) tingling I had, along with a slightly unusual feeling big toe, was all one sided which made me a little worried.
Anyway, the diagnosis has turned my world upside down. I am about to become a father for the first time and I can’t stop thinking about the impact this may have on my ability to be a parent (and husband). Being a parent and husband means everything to me - I define myself and my value as a person in terms of how good a father and husband I can be and just the thought that this will make me a lesser able parent/husband is, literally, breaking my heart. I was so excited about being a father I almost can’t describe it and I feel that joy has been stolen from me by this. All my dreams of playing outside with my kids, taking them on holidays, and just giving them the best childhood imaginable have suddenly been shattered and I’m really struggling to cope. What if I can’t work and provide for my family? What if we can’t do activities as a family because of me? What if I’m forced to sit on the sidelines whilst my family have to get on with things without me? It is, in some sense, playing with my mind even more because of the fact I currently have so few symptoms - I can’t begin imagine how I could feel that would make me possibly need to give up work/not be able to do the things I want with my family, but deal with the prospect at the same time. I know that is going to sound insensitive to people currently dealing with severe symptoms, and I’m sorry, but it is just the reality of where I am right now.
I flit between trying so hard to be positive, reassuring myself that many people have a relatively mild disease course and that, even if not, it won’t stop me giving my family the life they deserve, to reading things, including on sites such as this and the MS Trust site, talking about ‘young carers’, reading quotes from sad children who have lost their innocence and have to look after a parent and are living difficult lives ‘in spite’ of MS etc… I think such children are brave and I’m not saying they have a bad life but it makes me so sad to envisage a future where my children are having to take care of me rather than the other way around - a life robbed of the carefree joy and fun they should be experiencing.
Can people provide some perspective to this for me? I can’t talk to my wife at the moment because I’m not willing to burden her with this whilst she is pregnant and I don’t want to take the joy of the current situation away from her as well as from me. I’m aware I’m pretty raw having just been diagnosed and am probably (I hope) letting my mind run away with me. Stories from parents - Mums or Dads - whose MS doesn’t stop them being the parent they always wanted to be, activities they do as a ‘normal’ family, whose MS isn’t a burden on their children, would really help me out of a difficult place right now. If I do progress to more disabling symptoms when my children are adult, I can live with that, but I need to give my children a childhood first…