Dating Someone with MS
Hello to whoever read this. My writing in English is not perfect.
I saw this wed site and I have been reading the stories, and I decided to write something as well.
How it all started
My boyfriend was diagnosed with MS 2 months after we moved in to our new apartment. The symptoms started September 23, 2020. He complained about headaches a lot. We went out to eat on September 25, 2020. He said he was dizzy and he felt like he had a hangover . We went home gave some medication . He went to work the next day, when he got home he said his head was heavy, he can’t walk straight. Next morning I was preparing his stuff for work, he couldn’t get out of the bed, he couldn’t walk without falling over to the sides. He lost his balance completely. He doesn’t have insurance so we try to treat it at home, not knowing It was MS. The following day he lost moment on his left side.
First doctor visit
We went to the hospital on September 29,2020, when we got to the hospital they told us he was diabetic and that is why he had those symptoms. They sent him home and told him to see a primary care doctor. He is not diabetic. But we didn’t know . We trusted the hospital. On September 31,2020, he got worse he started to throw up and was now not even walking .
Second doctor visit
We went to another hospital for a second evolution, again they see nothing wrong. “He just need to sleep 12hr, here are some medication for his dizziness “. At that hospital they confirm his not diabetic but he look tired and needs to sleep. We went home he took the medications. Has the days went by no improvement, he couldn’t walk , he had lost movement on his left side.
Third doctor visit
This time we go see a friend who was a doctor back in our country (Cuba), he evaluates him at his house. He told us how could no one had seen this, he had a stroke, you need to take him to the hospital ASAP.
Fourth doctor visit
We go back to the first hospital we went to again on Oct 3,2020. I got aggressive and demanded answers because we keep getting different results and look at how he is now. I told them I was a doctor and they told us he had a stroke.
Then the neurologist came in
That’s when a neurologist came in did some test and told him he needs to stay over night, we need to do some tests but there is some neurological damage. The next day the doctor told us about MS, that it had spread to his spinal cord, he would be getting steroids here at the hospital but he needs to see a neurologist after he is done here for treatment. Of course we don’t have insurance and we can’t afford a neurologist. So we went to free clinical trails. He got out of the hospital on October 8, 2020.
Exploring clinical trials
On October 12,2020 he had his first appointment with the free clinical trails. They told us he was not able to start on the medication into he November, due to him having steroids. During this wait time, my boyfriend had two relapses. One on November 3,2020 he had steroids again. On November 19,2020 he had lost his vision on the left side. We went back to the hospital they did plasma exchange plus steroids. He later on then started to lose both eyesight. Not into December 16,2020, he started to take the MS medication. He was doing okay, he had a lot of moments were he was depressed, had a bad temper, lost of memory, repeated himself, lost his concentration, was very depended of me to do everything and that made him angry, upset with himself. It was time he would just sit in the sofa all day just staring at the wall. Since he lost his vision, he couldn’t see. I was the only working (still am). He is vision has come back a little , but he can’t see far away, needs to be up close.
A hard difficult journey
This journey had been really hard. I try to give stress, but this had drained me so much. I have a 4 year old and it has been difficult taking care of my boyfriend, my daughter, school, work, house. Everything. Sometimes I see him without motivation to succeed , to learn how to live with this. To learn more from it, to at least learn to take it day by day. He sometimes doesn’t talk about MS or how he feels. I try to get to open up to his doctor and he doesn’t want to. Everything the doctor ask him something he is fine. But he is not. He is depressed, he has no motivation. I try to get motivated by doing things together and get him to go outside or do things at the house . But is draining me out.
Another relapse and trying my best
Today July 10, 2021 he has another relapse. He is loosing the eyesight again, head is heavy, losing balance , forgetting things , headaches. And I don’t know what to do anymore . We have to move out our apartment because I can’t afford paying everything by myself and we are moving into my parents house . It has been stressful. And it has not been easy. I understand is not easy for him to feel what he feels. But sometimes I feel like he doesn’t see that I am the one who picks him up everytime he is down. Everytime he can’t walk, or can’t shower, or feed himself or get dressed, who cleans his throw up, who take his bad temper and his bad mood, who looks the other way to make him happy. I was the one paying all the bills and maintain the house for a year now, while getting my associates in psychology. I am sorry, if I am just going on and on about the problems. But this what’s is like dating someone with MS, especially someone who still hasn’t processed the fact this something he has to learn to live with. Yes there are great moments but this year has had a lot of bad ones . To be honest typing this little story has somewhat relieved me frustration. Thank you for whoever read this .
Does listening to music help lower the severity of your stress or MS symptoms?