Hi there,
I was diagnosed in Feb of 2011 after my second attack. I had my first attack in Dec of 2008. I am single and live alone. My family lives in different states. I am an independent consultant, so my income is dependent on projects I get from clients. My first attack took about a year to recover from. Probably because I was under a lot of stress and my GP told me there was nothing wrong with me - even though I expressed concern that I had MS (I had a dream about 11 years ago that I was told I had MS - that never really left my mind).
So from my first attack up until my diagnosis and getting on Avonex, I could not work much. The work I did was part time projects and I did a horrible job, which caused me more stress. I could hardly get out of bed - I'll address this more below.
I had my second relapse after my family came to visit for Christmas in 2010. My family was extremely supportive and planned to move here to be near me and help me. They wanted to get involved with the MS Society as well. I felt so loved and supported - more than ever in my life.
During the next 6 months this all kind of went away. No follow up about moving or being involved with the MS Society. Our communication lessened.
In addition, my best friend did not understand. I think she felt like because I was living a 'normal life', that I should be available most of the time. One of my largest issues has been fatigue - she told me that she had a friend with Lymphoma and she still went out, even during her chemo.
Recently, we had a family vacation. I had to drive about 1300 miles there and back. It was a good time, but during this time my 'life' came up. I was very shocked and hurt by the things I found out on this trip.
I basically found out that my family has no idea of what I've been going through. They all individually made me feel horrible about my life. They criticized me for not being more financially secure. They said asked me 'what has happened to you? You used to have it all together'. I sat and listened about my weight and how I should be able to deal with everything because I am a 42 year old woman.
All this time I'm in a personal 'hell' struggling with daily life. I think the emotional ramifications as well as the physical and now fatigue without a support system just flattened me.
My uncle calls me and tells me "I have my head up my ***" financially. Although he doesn't know or doesn't accept that I had to go through my savings and retirement funds because I could not work much for almost 2 years. My brother also did the same - he also said that I only have 10 'good' years left before I'm done in my career and financially.
My mom told me at one point that I was acting like a victim. Although, because of our lack of communication, I was realy only trying to educate her on what this has been like.
My mom is the person who asked me what happened to me.
Hi mom! Lets see - I had my first attack that took a year to recover, I was so stressed out about work, feeling so guilty, both of my dogs died within a year (they were my children and kept me going during this). Not to mention the emotional toll of losing them and going through their illness and taking care of that by myself. One died unexpectedly on the staircase one afternoon and the other after a surgery the day before he was to come home. I have 2 brothers and one was upset with me for not going to the family vacation last year.
He told me that my dog was just a dog. I called my parents just after it happened and my mom's response was that 20 years ago they had a dog that died at home. But they also have dogs now and my mom has said that if they die, she would not know how to go on. So it is not like she does not understand. My dad has been very supportive of these situations, but very quiet. He's never said anything negative.
I sent an email to my family letting them know that I really needed some support. They all have spouses, etc. There was no response to my email. This was about 6 months ago.
Going back - During my first attack I literally was crawling frequently and I would be in bed for 2 days after going out to run errands. I would take the dogs for a walk because they needed to get out, but I was in so much pain. I was just struggling to make it through each day - trying to deal with my responsibilities and my dogs and work and finances.
Before their 2010 Christmas visit, I did everything to make their visit nice. I even drove 3 hours to get the perfect Christmas dishes. I spent about 2k to get everything set up with linens, beds, Christmas decor, you name it (I had my second relapse after this).
Then I'm asked 'what happened to you?'.
I was hurt when the plans for everyone to move her and get involved with MS didn't come through, but then to ask for support with no support really hit me. Then the recent vacation comments. I remember telling my brother that I just needed 2 minutes to talk to my parents and hear them say that they loved me...sincerely. His response was 'it's never 2 minutes'. He could only know that by talking with them.
So after all of this, I'm just left dumbfounded and feeling pretty awful. I think, as with my friend, they must think that because I physically (besides fatigue) am symptom free, that I'm fine? I don't know. I do know that picking up the pieces on a daily basis and living emotionally and physically with MS is very difficult.
I'm mostly ranting, but would like to hear if anyone has been through the same type of experience. Thank you for listening.
I was diagnosed in Feb of 2011 after my second attack. I had my first attack in Dec of 2008. I am single and live alone. My family lives in different states. I am an independent consultant, so my income is dependent on projects I get from clients. My first attack took about a year to recover from. Probably because I was under a lot of stress and my GP told me there was nothing wrong with me - even though I expressed concern that I had MS (I had a dream about 11 years ago that I was told I had MS - that never really left my mind).
So from my first attack up until my diagnosis and getting on Avonex, I could not work much. The work I did was part time projects and I did a horrible job, which caused me more stress. I could hardly get out of bed - I'll address this more below.
I had my second relapse after my family came to visit for Christmas in 2010. My family was extremely supportive and planned to move here to be near me and help me. They wanted to get involved with the MS Society as well. I felt so loved and supported - more than ever in my life.
During the next 6 months this all kind of went away. No follow up about moving or being involved with the MS Society. Our communication lessened.
In addition, my best friend did not understand. I think she felt like because I was living a 'normal life', that I should be available most of the time. One of my largest issues has been fatigue - she told me that she had a friend with Lymphoma and she still went out, even during her chemo.
Recently, we had a family vacation. I had to drive about 1300 miles there and back. It was a good time, but during this time my 'life' came up. I was very shocked and hurt by the things I found out on this trip.
I basically found out that my family has no idea of what I've been going through. They all individually made me feel horrible about my life. They criticized me for not being more financially secure. They said asked me 'what has happened to you? You used to have it all together'. I sat and listened about my weight and how I should be able to deal with everything because I am a 42 year old woman.
All this time I'm in a personal 'hell' struggling with daily life. I think the emotional ramifications as well as the physical and now fatigue without a support system just flattened me.
My uncle calls me and tells me "I have my head up my ***" financially. Although he doesn't know or doesn't accept that I had to go through my savings and retirement funds because I could not work much for almost 2 years. My brother also did the same - he also said that I only have 10 'good' years left before I'm done in my career and financially.
My mom told me at one point that I was acting like a victim. Although, because of our lack of communication, I was realy only trying to educate her on what this has been like.
My mom is the person who asked me what happened to me.
Hi mom! Lets see - I had my first attack that took a year to recover, I was so stressed out about work, feeling so guilty, both of my dogs died within a year (they were my children and kept me going during this). Not to mention the emotional toll of losing them and going through their illness and taking care of that by myself. One died unexpectedly on the staircase one afternoon and the other after a surgery the day before he was to come home. I have 2 brothers and one was upset with me for not going to the family vacation last year.
He told me that my dog was just a dog. I called my parents just after it happened and my mom's response was that 20 years ago they had a dog that died at home. But they also have dogs now and my mom has said that if they die, she would not know how to go on. So it is not like she does not understand. My dad has been very supportive of these situations, but very quiet. He's never said anything negative.
I sent an email to my family letting them know that I really needed some support. They all have spouses, etc. There was no response to my email. This was about 6 months ago.
Going back - During my first attack I literally was crawling frequently and I would be in bed for 2 days after going out to run errands. I would take the dogs for a walk because they needed to get out, but I was in so much pain. I was just struggling to make it through each day - trying to deal with my responsibilities and my dogs and work and finances.
Before their 2010 Christmas visit, I did everything to make their visit nice. I even drove 3 hours to get the perfect Christmas dishes. I spent about 2k to get everything set up with linens, beds, Christmas decor, you name it (I had my second relapse after this).
Then I'm asked 'what happened to you?'.
I was hurt when the plans for everyone to move her and get involved with MS didn't come through, but then to ask for support with no support really hit me. Then the recent vacation comments. I remember telling my brother that I just needed 2 minutes to talk to my parents and hear them say that they loved me...sincerely. His response was 'it's never 2 minutes'. He could only know that by talking with them.
So after all of this, I'm just left dumbfounded and feeling pretty awful. I think, as with my friend, they must think that because I physically (besides fatigue) am symptom free, that I'm fine? I don't know. I do know that picking up the pieces on a daily basis and living emotionally and physically with MS is very difficult.
I'm mostly ranting, but would like to hear if anyone has been through the same type of experience. Thank you for listening.
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