CitizenVectron
Member
My gf was diagnosed with MS in 2015, and it's been a rough ride. She is doing well at the moment, but the nature of MS is that you will get repeating relapses (inflammation in the brain/spine) that accumulate more and more permanent damage.
She is on medication at the moment (Tecfidera - dimethyl fumarate), and will be hopefully switching to stronger medication (Lemtrada - alemtuzumab) soon.
Every case of MS is slightly different, and Lemtrada seems to slow or stop progression in around 50% of people who use it (though there are also significant side effects). In 10 years (at age 37) she could be walking and working...or she could be in a wheelchair and need constant care.
It's tough to handle on a day-to-day basis. It's always on my mind, and I know if she can no longer work that I will be responsible for both of our income and support (though at the moment she does have good access to long-term disability insurance, assuming her job remains the same). We live in Canada so at least her primary medical care (and medication) are covered by the government.
I've been through therapy before, and the main concept is that you effectively stop yourself from thinking about bad things through reinforcement strategies (cognitive behavioural therapy). This lets you feel better for much of the time, as you can avoid cycling down into despair.
But what about when the source of the despair is always there, and always needs to be considered? Last week she was feeling really bad and so we couldn't go to a BBQ that we had been looking forward to. I don't blame her at all, but I know she feels bad that her MS prevents us from doing things (it causes massive fatigue). Friends can't really understand why we have to 'flake out' on many things, or leave events early. One time I was picking my friend up from supper at his parent's place to go out, and they told me to dump her and find someone new so that my life wasn't limited. It made me so mad (and something I will never do). People who haven't dealt with MS or similar illnesses just can't understand.
I find I can no longer relate to people who don't understand what we are going through. I look at people I know and think "you just don't get it, you don't understand what a true burden is." To clarify, I don't consider my gf a burden, I mean the disease and coping with it. I can't enjoy simple things or fun things because the thought of the futility of it all is always in the back of my head. I feel jealous and angry towards people who are carefree and just live life without thought. I feel kind of like (in a weird way) those people who have kids and then say "you just don't understand." The comparison is also fitting in that people with kids slowly drift away from single friends. I feel like we are (and will continue) doing the same.
I am considering going back to a counselor as I've been feeling very depressed about it lately, and it's affecting my own ability to do things and function. I stay stoic around her, but how can we deal with something that will slowly take her life away from her, one relapse at a time?
Sorry if that isn't written out very well, I'm kind of making it up as I go.
She is on medication at the moment (Tecfidera - dimethyl fumarate), and will be hopefully switching to stronger medication (Lemtrada - alemtuzumab) soon.
Every case of MS is slightly different, and Lemtrada seems to slow or stop progression in around 50% of people who use it (though there are also significant side effects). In 10 years (at age 37) she could be walking and working...or she could be in a wheelchair and need constant care.
It's tough to handle on a day-to-day basis. It's always on my mind, and I know if she can no longer work that I will be responsible for both of our income and support (though at the moment she does have good access to long-term disability insurance, assuming her job remains the same). We live in Canada so at least her primary medical care (and medication) are covered by the government.
I've been through therapy before, and the main concept is that you effectively stop yourself from thinking about bad things through reinforcement strategies (cognitive behavioural therapy). This lets you feel better for much of the time, as you can avoid cycling down into despair.
But what about when the source of the despair is always there, and always needs to be considered? Last week she was feeling really bad and so we couldn't go to a BBQ that we had been looking forward to. I don't blame her at all, but I know she feels bad that her MS prevents us from doing things (it causes massive fatigue). Friends can't really understand why we have to 'flake out' on many things, or leave events early. One time I was picking my friend up from supper at his parent's place to go out, and they told me to dump her and find someone new so that my life wasn't limited. It made me so mad (and something I will never do). People who haven't dealt with MS or similar illnesses just can't understand.
I find I can no longer relate to people who don't understand what we are going through. I look at people I know and think "you just don't get it, you don't understand what a true burden is." To clarify, I don't consider my gf a burden, I mean the disease and coping with it. I can't enjoy simple things or fun things because the thought of the futility of it all is always in the back of my head. I feel jealous and angry towards people who are carefree and just live life without thought. I feel kind of like (in a weird way) those people who have kids and then say "you just don't understand." The comparison is also fitting in that people with kids slowly drift away from single friends. I feel like we are (and will continue) doing the same.
I am considering going back to a counselor as I've been feeling very depressed about it lately, and it's affecting my own ability to do things and function. I stay stoic around her, but how can we deal with something that will slowly take her life away from her, one relapse at a time?
Sorry if that isn't written out very well, I'm kind of making it up as I go.
