I have to admit that MS can be easier to handle, cope, and accept some days, but other days it can feel like the world is caving in on you. That is where I feel I am right now. Not all of it is the MS, some is the economic times but either way I look at it, it still falls back on the MS.
My MS has been extremely active this year. I have not had any recent MRI's to see if it is progressing or more permanent damage done, but my life has been extremely affected because I haven't had too much down time. Down time is kind of a funny way to say it, because what I mean is not many good days. Because of this I am not working, and we are trying to raise a family of 5 on just my husband's income. I know a lot of people are having to do the same thing because of the economy. There is a difference though. Besides the normal bills, car payments, rent/ house payment, groceries,clothes for the kids and their needs,school fees and school related stuff..We also have to pay for loads of medications, shots, more doctors visits (actually a lot) and special needs equiptment.
I realize that jobs are far and few right now, but because of my issues, I feel as though I am not pulling my weight. I did for many years. I find myself saying a lot more now, "THIS IS NOT THE WAY MY LIFE WAS SUPPOSED TO GO". Now if I looked at it from the religous stand point, then yes, apparently this is what God wanted for me. But how can that be? I can't imagine God wanting something bad for me. Which leads me to believe that I am supposed to be learning something from this or maybe a punishment for something in my past that I don't know I did. If I look at it from my stand point, I stick with my view of "This was not the life I was supposed to have". I was active, I took care of the cooking, cleaning, the kids, the bills, the homework, the groceries, the yard and ponds. Not because I had to, but because I loved doing it. I have a wonderful husband that would have done it but I chose to do it all. Along with all of that: I was very active with the community and neighborhood watch captain, active with the schools and PTA, was always worrying and trying to save the world in anyway I could. Some people claim that Multiple Sclerosis is most found in people with Type A personalities. I guess, in my case that is true. I was always told to stop worrying about others so much and worrying about the what if's.... If I didn't have something to worry about, I would borrow other people's worries. My Mom and I used to joke about that all the time.
Now, as I sit here, I wish I would have listened. maybe I wouldn't be in this postion. No matter how hard I have tried, I still can't stop worrying about stuff. I worry more about my family but still spend a lot of time worrying about others. I guess that is just me. I don't think that will ever change. I always have to figure out the WHY?? So, I have come to the conclusion that this diagnosis was not a punishment, it is now something that I have to learn to deal and cope with so I can help other's with MS in some way or another.
I worry about our bills, groceries, utilities and so on, but as funny as it is, you would think we would qualify for assistance somewhere somehow, but we don't. We are always $40.00 - $60.00 over to qualify for any assistance. I have no clue how they figure that out. It is very hard for me to ask for help or even accept help, because I am usually the one always helping others. And when I really do need it we don't qualify. I don't know where this road/journey is going to take us or how we are going to survive it, but deep down I know we will. We have to... Our kids depend on us and I will make it work... As I say this, I laugh because I have no idea how this is going to work but I will figure it out.
I carry a lot of guilt daily for putting my family in this situation. If I wouldn't have gotten this disease, my family would't be suffering the consequenses of it. My kids would have their Mom around more for them, not sleeping because of the severe fatigue. I would be working and being able to pay the bills, hopefully. I would be taking care of all the things I used to.
My DreamSince I spend a lot of time laying down, I have nothing to do but think. I think of all the things I wish I could do but most of all, I think about how I can help my fellow MS'ers. I have come to the conclusion that if I had it my way... I would be out helping the Newly diagnosed and their families. I would help them understand, prepare, but encourage them to fight this disease. I would help their families understand MS and help teach them how they can be supportive to their loved one. I would open a donation drive of clothes, food, meds, money and so on to help those families when they hit rough times. So they are not having to chose between Medicines and groceries, or clothes for their children and school supplies vs. utility bill. While doing this I would push for more information about this disease. There are over 200,000 Americans diagnosed with MS and many more each day being diagnosed. The average age used to be between early twenties- mid thirties and majority being women. Boy how that has changed. They are finding yound children even toddlers with it and a lot more men being diagnosed along with older ages. And yet, if you ask people (the public) about MS most don't know much at all. The surprising part is that those same people that don't know much at all will admit that they know of at least one person with it. I agree that money should be going to research for MS. I also believe that the cure is out there and when they find it, that will be a huge breakthrough for hundreds of other Autoimmune Diseases. But until then, countless numbers of lives have been lost (due to complications of MS) and quality of lives affected.
Until then, I will be trying my hardest to achieve MY DREAM along with trying to survive the economy and times. I truly believe fellow MS'ers believe and would agree that this is not the way "our" lives were supposed to go.