MS Blues

I am in the middle of an exacerbation, or at least my Doctor thinks I am. I am having horrible muscle spasms, which is not uncommon for me. However, this time it is throughout my whole body. My arms, face, hands, etc. It is common for me to have them in my legs but not to this extent. I can not feel my feet or my legs, from my thighs down. I can feel pain but at the same time very numb. Solumedrol is the only option the doctors have but I do not tolerate it and have horrible side effects from them. So, my decision to not take them is not to be a martyr, it is that the side effects are much worse then the relief.

I am so depressed at this moment. I normally am very positive and push fellow MS'ers to fight this diseas and not to give up. Today, I am giving in to the sadness and anger. I live in a two story house with my bedroom upstairs. I am scared and unable to do the stairs due to the pain and numbness. I can do it, I am just scared. I have been living in my room for the last 4 days. It scares me to think that my legs are going away, or at least the ability to use them the way I always have. At the moment I hate this disease and I can't stop crying. I don't even know why??? This is not like me. I feel like I am living in a world alone. I have not been able to be apart of my family unless they come up in my room.

I think sometimes that maybe a solution is to move our bedroom downstairs. That would solve the issue of being trapped upstairs. At the same time, when I feel like this, I really don't want to be around anyone. I am not normally one to cry or be emotional, when it comes to this disease. But I have lost my inner strength. My Doctor told me a few years ago that I would most likely be in a wheel chair. Normally, I am the person that if you tell me "NO", I will prove you wrong. Yesterday my Doctor told me I should consider getting on disability. What would that do for me? I am don't feel like my life at 37 should be over, when I was only diagnosed 3 years ago. I have known people that have had this disease for years and still live normal lives. If I was at home on disability, I feel like I would have nothing left. Our family needs the money, and I need something to make me feel proud of. I love my job. I have the ability to work from home when I need to, but I love going in to work. People that come in daily don't know that I have anything wrong. I like that feeling. I feel that I am disappointing my kids, husband, parents, etc. I have always been a strong willed person and stubborn at times. I have gone through a lot of heartache and it has made me the strong person, that I have always been. I feel like I am losing that person and it scares me.

I sometimes think that using a wheelchair at times would give me some of my life back but at the same time, I feel like I would be letting my family down. The worst part of this disease is that nobody can see the pain. Since being diagnosed with MS, I have also been diagnosed with Chron's and Fibromyalgia. These are common with MS. But for me, it just doesn't seem fair. I am angry and sad and scared as to what is coming next and where this is going. Usually, I keep a smile on my face and most people don't see the pain and anger inside of me. I think people, get frustrated because I don't do all the same things and am uncapable of doing what I have always done. So, again, I disappoint them. I feel like they have no problems telling me how I disappoint them, but I don't ever say anything back. I just take it in and then, I end up where I am now. A place, where I feel that I am nothing but a disappointment to everyone but also to myself.

Everyone goes on with life and all there "problems" and I try to understand and be there to help where I can and to listen. But when it comes to me, if I say anything about what is going on with me, then instantly, it is "Tara, stop it" or "Tara, you need to just exercise more", Or "Tara, you should go see a shrink"... What is it not ok for me to be upset or angry or even sad at times??? I just wonder how these people would act if it was them in this situation??

I know, I probably shouldn't be writing this, but maybe it will help someone else that feels the same way, to know that they are not alone. Also, it helps me to get it off my chest, because it is apparent that I can't tell people how I feel. People instantly try to fix you... Or fix the problem... Hey eveyrone, You can't fix a problem like this. You can't fix me. It is what it is.. I don't like it, actually I hate it. But until you are in my position or someone else with the same situations. You will never truly understand what goes on in our bodies or our minds.

I am going to post this without rereading, because, I will just delete it... Sorry for spelling mistakes.