Nearing the End of My Journey and I am Scared
As I lay here at home on my hospital bed I decided to try here for support. My brain is telling me to get my affairs in order as soon as possible. Does anyone feel like there is a truth to our gut telling us when we are going to die? I’m scared so much of dying. I am 43 years old and have had MS for a bit over 23 years. I have a 23 year old son and a 20 year old daughter. I don’t want to miss having grand children and weddings and such. My mother whom I have been living with and taking care of each other really can’t take losing another loved one especially me. Not to sound conceited. She has a heart condition that almost killing her. We’re each other’s best friends. My cousin and my identical twin sister also have MS. I was an athlete and a nursing assistant and administrative assistant and now I am considered a drain on the economy. Nothing is working and the pain is so bad, everyday is off the charts. I have constant vertigo and a bunch of other things and complications to the point I am on palliative care and next will be the evaluation for hospice which I will be doing from home. I did everything asked of me the poking and prodding and radiology scans and needles now I have a port. I didn’t ask to be born let alone ask to be this sick. It is to the point I question my faith I question why I ever bothered to be a good girl and follow the rules. Life wasn’t supposed to be this way. My husband cheated and left and married my stepsister because I was too sick and he couldn’t handle it. If I knew this was going to be suffering literally my entire adult life I’m not sure I would be here talking to y’all right now. Long story short, does anyone else have an urgency to get their affairs in order? How long has your MS journey been before you got the that point?
My heart goes out to you,
. I can't even begin to imagine what you are going through right now. I hope this is a relapse and that you will experience a good deal of recovery. From my observations in this community, it seems some people feel the need to get their affairs in order soon after they are diagnosed even if their symptoms are mild. Others never do it, even if their symptoms are severe, often out of fear that addressing end of life issues means they are giving in to MS. You might find that it is a relief to draw up a will and make decisions now about your future treatment. Here is an article from one of our advocates about late-stage MS that you might find helpful: https://multiplesclerosis.net/living-with-ms/late-stage. I hope you get lots of responses here because this in something that is not talked about often and that we shouldn't be afraid to discuss. Please know that we are here for you whenever you need support or a place to vent, and keep us posted on your condition if you feel comfortable doing so. Thinking of you and sending lots and lots of healing vibes your way. - Lori (Team Member)
