This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
 
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Kids...

Happier times! Things have been a little tense around my house lately. Nate is having a really hard time. He is so angry, and I just don't know how to help him. I think it is a combination of things. I know he struggles with my illness. Since he was young he had a tendency to worry. He worries more than any kid should ever worry. I am sure a lot of it has to do with the fact that I was sick before, when he was much younger.

I am a single mom and so I know that he worries about what would happen to him if I should die. I know the MS is a major source of his fears. It has been more difficult for him to accept and I think a lot of that has to do with the fact that he is older and can see more of the symptoms where it was not as obvious to him when I was sick before, not to mention all of the uncertainties, the unknowns that come along with MS. I also think that he does not know how to handle his emotions. He does not have the coping skills to handle all that is going on. This is where I have tried hard to get him into the appropriate programs. I put him in counseling, got him set up with a caseworker, and I try to talk to him all the time. I try so hard to be supportive. I go out of my way to do things with him that would take his mind off all of this. I think it is important for him to be able to get out there and just be a kid.

For about a month now he has had this independent streak about him. I try and encourage him to be independent, but his behavior has been out of control (cussing, angry, outright mean). This is not his nature at all. I am not sure if it is hormones or what. I am SO not looking forward to that. I know that he is angry and somewhat acting out, and he is entitled to have his feelings but there are also times where I think he uses my illness as an excuse. An excuse to push the limits. He acts out and then blames is on my being sick...that is not okay! He seems to be in this stage where he wants to rebel, see what he can get away with. Some of it I think does come from all of his anger. Not just from the MS, but from the other things he has been through (he has not had it easy). He also seems to think that he is much older than he is (you know how it is 11 going on 18, all kids go through that stage).

Don't get me wrong, he is a good kid and he can be very responsible when he wants to be, but he is just 11. It is amazing to me how kids grow up so fast now. I know that when I was young I had a lot of issues, I went through a lot of things, I rebelled and was in a lot of pain. Nathan has some depression and his anger is unlike anything I had. Maybe boys just handle things different. I am not sure. Of course our situations are not exactly the same, and times have changed. I just worry so much about how he will get through this. I do all that I can, but at the end of the day....will it be enough? That is my fear!



I wish that I could just take all of his pain away! I understand that there is only so much that I can do. I can be there for him and I can love him forever and always, which I do, and he knows it. I tell him every day. I think what is so hard for me, and I am sure it is just as hard for him is that we are very close. I hate to see him in so much pain, and I am sure that he is having some of these same emotions in regards to me.....he hates to see me in pain (MS). This is where this illness can really do a number on people. This is where we have to be strong! This is where we have to FIGHT!

I have been trying very hard lately to regain some of my health in an effort to regain some of my day to day life. I have been so focused on diet and things of that nature, and that is great, but I think that I need to regain other areas of my life too. I came to the realization earlier today that "my pain" what has been feeding my depression as of late is the fact that I just can't seem to come to an acceptance myself that I won't be able to do the things I had planned for my life, at least not in the way I had planned them. Some of my dreams will still be possible, others will not be. How does someone accept that? So, if I can't accept this and I am depressed, why would my son be any different? Maybe some of his mixed emotions are coming from mine, after all we are very close and he is very perceptive. Before this illness I had a bright future. I have lived a life full of many challenges, all of which have made me stronger, they made me the person I am now, and so I do not regret them. I also have had a life full of many blessing, many good times! And, because of the mistakes that I have made, the situations I have been in, I have been blessed. I have been able to help others, I have learned from my mistakes and I have grown.

Maybe, just maybe because of what I went through there is someone out there who will not live the pain that I did (I know that this may not make a lot of sense to some of you right now, but if you know me well, you know what I am talking about, if you don't maybe one day you will find it out). I am thinking there MUST be something more! I believe that everything happens for a reason and that we each have been put on this earth for a purpose. I have to believe that all of this that I am going through, all of this that I have gone through is for some reason, maybe so that I can reach out to others, I just don't know.

6 comments:

mdmhvonpa said...

Not to trivialize the issues your Son is wrestling with, but I think Pathways has some resources that may be of some help.

Check here

Jaime said...

Thanks! I am not sure if they can help or not. They are located in Australia, so we will see. I sent them an email to see what kind of services would be available for people here in the US.

I am sure he will be okay, I just worry about him because he is my baby, you know how it is, you are a parent!

I do have him in counseling here to learn some coping skills and he just recently started to take an anti-anxiety med (which has helped alot, amazingly). I just think this time in his life is very hard on him. And, it is difficult because I can't really relate. I mean, there are things that I can relate to from my past but they are still different (boys respond different). As far as his fears with me...that I can't relate to, my parents were always healthy.

He is a good kid and he is strong. I know he will pull through this, it will just take time. I just hate to see him in so much pain, so upset, so angry. And, when he gets this way...sometimes I wonder how much of it I can handle, and I hate to feel that way. I don't seem to be able to handle stress like I used to. Maybe that is in part why this seems so hard...I am just not as strong as I once was emotionally.

Thanks again for the referral. I will keep you updated on what I find out. Did you have an experience with this place? I would be interested to hear how you got through those hard years, didn't your Mom have MS? (if you don't mind, you can send me an email) Well, life just isn't easy, but he is such a wonderful person and I KNOW that when he makes it through all this he will be a much better man because of it!

mdmhvonpa said...

Welll, about mom. She hid it. For a loooong time. Long enough for me to DX and then she told me. Not the most celebrated moment in our relationship.

As for Pathways, they may be able to find you help in the US ... the HQ for the MSAA in NJ may also be a good place to inquire.

Kids are resillient ... but what one person calls 'character' another would call 'damage'. I find the later to be offensive.

camille said...

Jamie, your son is so sweet. and its good you are getting him counselling.He will always watch over you. my son seems to spend more time with me when my husband goes on business trips.

Jaime said...

mdmhvopa~

I completely agree! Who isn't "damaged" the trials we have in our lives is what helps us to become the people we grow into (our character). This is how we learn and without these trials, without the ability to go through some bad things, and without the possibility of making mistakes we would never come into our own. This is how we develop into strong, reliable, dependable, mature, responsible, caring, compassionate, and loving men and women (well, at least some of us, lol).

I know I have not had an easy life and as difficult as the things were that I went through, there is really only one thing I wish I could take back. Everything that has happened to me (health, abuse, etc.) and all that I brought upon myself (my own acting out as a teen) I look at as a blessing because I have been able to help other people through my experiences, and most importantly maybe I will be able to help my son through his difficult times. My biggest struggle will be with the MS as this is something new for the both of us, but I also know that I am a fighter and will never give up! There may be days where I want to, but it will never last for long, it just is not in my nature. :)

Thanks again for all of your help. I hope you are feeling better and that your MIL is getting better as well. You and your family are in my thoughts and prayers. Please take care.

Jaime

Jaime said...

Camille~

I am very lucky to have my son! He is very sweet and I know he hates to see all that is going on with me. He wants to help me out and so he does but at the same time he just wants the life we used to have. He wants us to be able to just go out and play and have fun all the time. He misses when I used to feel good and have energy. He tells me all the time. That piece I can understand, because that is where my depression stems from, I miss being able to go out and live my life the way I was able to just a couple of years ago. The difference is that I understand this is why I am doing the things I am now (the meds, diet, exercises, doctors) where he does not understand it. He just wants it to happen NOW!

He is having a hard time right now, but he will come through it. No matter what happens he knows he has a solid support system. Not only does he have me (and we are very close) but he is incredibly close to my parents (especially grandpa) and my sister, Justin (his step-dad) and now with counseling and the case-manager getting him better involved with activites in the community, that will help too!

I think this year has just been overwhelming with TOO many changes for him. Moving, my health, my dad's stroke, my grandpa died, my grandma got sick and had surgery, now my parents are moving (not far only about 20 minutes away, but he used to be able to ride his bike to their house, he is sad about that), changing schools, having to make all new friends. It is a lot of changes for a kid and more than I think he knew how to deal with, plus with my latest relapse that was just hard on him. I think he has just had enough and this is how it is all presenting itself.

He has just started counseling recently so we have not really seen the benefits of that yet, I am hopeful though! He is such a good kid and I just want him to be okay. I just know that WHEN he gets through all of this, he will be such an amazing person because of it. It will make him more understanding and compassionate. He will be stronger and when he is older he will make a wonderful husband. I just have to remain positive for him, I have to continue to fight for him. Right now I don't think he has the confience to fight for himself.

I am glad that you have a son that is able to be there to support you. It is important to have a support system in place and I know you have been having a hard time lately. I am sorry for all that you have been going through. I hope that things settle down and that you start to feel better real soon. You are in my thoughts and prayers. Please take care of yourself. You know where I am if you want to talk. :)

Jaime


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my story...my life with MS (among other things).

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