Ms spouse and confusion

07-20-2016, 11:07 AM

Hi

I thought i would write my feelings down as I don't know what to do .

I met my partner when I was 18 and she was 17 and we fell madly in love.. I knew she was the one .. As silly as it may sound but for me it was love at first site and everything was amazing .

At 24 she was diagnosed with relapsing and remitting MS and it was something that we had never heard of.

I remember going to the hospital and seeing someone so strong , someone so happy , someone who has been like an angle on my shoulder completely broken. She told me to leave and she wouldn't hate but I said no and knew regardless of what the future had In store I would have to be by her side .

A few years passed , countless hospital appointments and drips later we got married. For better and for worse I said and I meant it

After only 11 months married... I am now sitting in our room looking at the ceiling thinking if I am actually in love with her?

I feel as MS has totally changed her as a person, she isn't the person I feel in love with, thank god she isn't bad but she just isn't the same, which I understand but what am I supposed to do?

She can't do the normal things like go town and buy something or just make a decision - the person I once adored has become someone I don't want to be around. It's not her fault and I totally get that but is it selfish of me , I am actually not happy.

Our marriage consists of take out food every day as she is too tired to cook, I work 12 hours a day to provide for her and my weekends consist of going to A&E as her eyes feel week or she doesn't feel stable or something else.

I don't feel like her lover no more - more like her carer and that is not something I want. I said for better for worse- I did- but this feels like a whole new person and I actually don't know what to do

I'm not a badguy.. It's been 11 years but I can't do another 40 or whatever I have left with someone I barley connect with or even recognise.

Any advice would be great

Thank you

07-20-2016, 01:54 PM

Hat123 ,

Welcome. Caregiver burnout is real and will sap your own health.

MS is a stigma to some, it can mean the end of her social life. Even though their is no genetic inheritance, an MSer in some countries for example, can cause the entire family to be blacklisted from marriage and future prospects. MS is has been increasing in some countries. My MS Specialist has shared that the social stigma is really difficult in her ethnic community.

As to long term, fatigue is real. It is a burden we carry and non-MSers often have difficulty in understanding. Also, your wife may benefit from adaptive equipment to aid in her mobility or energy savings.

Your wife needs to speak with others. I would encourage her reading this site too. Your wife is probably depressed. This can be alleviated when she realizes that MS is chronic, that she is not "damaged goods", and that she can still enjoy life. Some of this entails getting through the social stigma of her community. Also, looking at re-defining her definition of normal. This will help her acclimate to the change and not grieve what she once was.

I would also encourage her to get moving. Start slow and simple. I have had MS for 39+ years. I have felt the social stigma from living some countries, but real friends stick with you. Cognitive exercise and physical exercise is beneficial to her.

Do not show her any pity. She needs to make a plan for her daily life. She can be independent. Yes, she will have bad days. I have Progressive MS. For me, I always have something happening. BUT by accepting certain limitations, my good days outnumber my bad days.

If she is having issues, an outside caregiver would bring you relief. Much of your feelings are caregiver burnout. I would encourage you to look at the caregiver forum. You need to be healthy. As to your wife, she can get through this. The MS forum is for her too. We do not judge and will support her as best we can.

Thank you for sharing.

07-20-2016, 02:21 PM

I am sorry you are going through this. MS can be really scary to some people; however, most of us get used to the idea , get educated on our disease and eventually become productive again. (Almost all of us fall apart in the very beginning!).

It sounds like your wife needs both support and help. Relapsing Remitting MS doesnt bring you this far down on a daily basis. The whole concept of relapsing/ remitting is that you have some bad days and you have good ones. It comes (relapsing) and goes (remitting). If she is having more bad days than good, when is the last time she saw her neurologist and is she on any medication?
She might want to consider medication to slow down the disease OR she might need medication to help with the symptoms, she may even be depressed. Medicine will help that as well.

As far as you go- you also need some support. You can join a caregivers support group or you can talk to a doctor yourself and get some feedback, but it doesnt make you a bad person because you are frustrated. I cant imagine that she is making it any easier on you.

Its really important for MSers to get up and move around! I work 3 jobs and come home exhausted too. I spend my weekends grading papers and doing household chores...but I have a husband who is really great about helping with dinner and not caring if one day I dont bother to straighten up the house. He knows Ill do it the next day when I have had a good night's sleep. Having MS is chronic- but it is not fatal. One has to learn how to balance life and rest- and then we can cope. Of course there are really bad days which hit all MSers, where getting out of bed can be exhausting just to think about...but for more of us, we have many more good days than bad days.

Please ask her to join us on the MS board, even if she just reads the posts. Try to convince her to see her Neurologist and talk to her doctor about what is going on. There are so many meds available to help with anxiety, depression, exhuastion and everything else- something will help her if she is willing to try it.

Best to you...
MSNik

10-11-2016, 09:12 AM

I just want to let you know you are not alone. My wife was diagnosed with Primary Progressive MS and her health mental and physical are declining. She has became reclusive and has move out and back to her home prior to our 5 year marriage. She wants nothing to do with me and does not respond to my calls or texts. I have decided it is time to take care of me. My soul has been drained in the last 2 years since the onset of her MS. I was blind sided by all this and I still believe we are soul mates but she has chosen to go it alone. That is just the type of person she is. She lives next to her parent who are in their 80s and I believe she is seeking her comfort zone. I think it is important to respect her wishes and I looks like a Divorce is inevitable. What is important is that you seek support through friends and family and even a therapist to help you through this rough time in life. You can not help someone who refuses to have anything to do with you. I finally am over the hump and an accepting the facts that are staring me in the face. Please don't be too hard on your self. This happens all the time and you must start thinking of you. Your health and well being should be a #1 priority at this time. I work in stressful setting in a prison and I need all the strength I can muster to get through the day. It does get better. Just take it one day at a time......Heartbroken in Mid Michigan.

Ms spouse and confusion

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