Changing into a person I don't know or like...
A quick preface to this is my wife has had a diagnosed in 2012 and prior to that many years of going to various famous medical facilities (Mayo, Cleveland Clinic and Univ. of Chicago) which all were not able to come to an accurate diagnosis. All of this caused a terrible strain which caused her to leave and have a handful of affairs. For most men this would've tipped the scales to leave and I honestly thought about leaving her but I looked at my faith and God for His support which he graciously gave to both of us. Now, after months of visits with a neurologist who specializes in MS the barrage of infusions, shots, meds she has stabilized with the attacks or episodes of fatigue and other physical issues.
I have been with her for each and every appointment for this disease. Listen to the neurologist tells her she must stop smoking so all the blood flow to her brain to work better. The MRI shows the disease is attacking her brain with a vengeance; looks worse than a brick of swiss cheese, so having heard this from the doctor(s) you would think she would stop the smoking. No she says, she's not ready. This is not the first item on the list the doctor has recommended. She has also be referred to see a therapist to address the depression and other issues but again she refrains from following through with these appointments.
As I explain all this to this forum, I sit back and watch this person who I have loved so much becoming a person I don't know and who I don't like. Day to day activities are so intermittent, the pity party, and the use of the excuse - "I have MS, don't you understand..." "join the MS Forums and learn about this..." This type of response is not received well on my part and I can honestly tell you there have been times where I just want to leave - walk away from all the smart aleck remarks, excuses and all the drama associated with this disease which I have said to everyone I know - I hate this disease for it has stole my loving wife from me...it has stole away the happily ever after story ending that we both envisioned for us both.
It is what it is (one of her favorite phrases) or acceptance is one thing but I know I cannot be alone with the doubt in my mind about being able to deal with this as it gets worse. And yes, the neuro doctor says, it will get worse with her and her behaviors.
So, here it is, I've joined the forum for MS... waiting for the enlightenment to strike me. I cannot say it enough, I hate this disease. I hate it that it is affecting us the way it is and don't wish this crap on anyone.
Ray
Thank you so much for your raw honesty and insight, Ray. Sometimes, it's easy for people to forget that MS not only affects the person diagnosed with the condition, but also the people that love and care for the diagnosed individual. It sounds like you and your wife have been on quite a rollercoaster in the past few years.
Since you feel called to stay with your wife, I encourage you to build a support system for yourself. Find an outlet for yourself. We have caregivers on this site that can tell you how important it is for you to take time for yourself (when possible!). Don't be afraid to ask for help or to find groups and activities that re-charge you.
As you already know, caregiving is HARD. And no one here will try to sugarcoat that fact! But, please know you are not alone! There are people here who can relate to what you have shared. I thought you might find this article from one of our contributors relatable -- https://multiplesclerosis.net/living-with-ms/the-few-the-proud-the-ms-spouse-caregivers/comment-page-1/#comments.
Thank you again for sharing! Please feel free to come here anytime to share. I wish you a peaceful evening!
Best, Erin, MultipleSclerosis.net Team Member
P.S. I think every single community member can relate to hating MS!
