Today is my four month Anniversary. I got my first symptom of MS four months ago. I know that doesn't seem long, but its been an eternity to me. It just happens to be four months ago was my oldest daughter's birthday. We had plans to go to the water park for her birthday. I was home in bed. Couldn't move. I am making great progress. I have cut down my Physical Therapy to once a week. We add on exercises each week that challenge me more and more. It takes patience and a lot of focus, but I pretty much meet the challenge. This week we ended on balancing on one foot. I did great, until the kids started bickering and fighting in the other room and I came crashing down.
I took my daughter to the pool the other day. We were on our way out. I made my way from where we were sitting, across the pool area, to the gate. I concentrated on the gate and walked towards it. I focused on every step, solid and steady, trying not to waiver or stumble....trying to look normal. After all, the pool here is full of beautiful moms, with a ton of kids, that have it all together. I sized up the gate before I got to it. I lifted the button with one hand and pushed it open with my foot, trying carefully to push just enough so that I could get through it but not so much so that it would slam back against itself and draw attention to me(I have difficulty with the amount of pressure I need to apply to things). I made it through the gate and to the picnic table on the other side. I sat down on the bench and grabbed my journal to scratch a few notes down. There was a woman on the other side of the table. She asked "Are you a writer?". I told her that I wasn't, but I have a blog with a small following of people that said I should write. She asked what the blog was about and I told her of how I was diagnosed with MS this year and the blog tells the story of my diagnosis and struggles through the process. She looked down her nose at me and simply said "Oh, I'm Sorry". Instantly, I thought not about her short reply or sudden lack of interest or halting of conversation. I thought...I made it all the way across the pool area, through the gate and sat down and she didn't know I had anything wrong with me. Yeah, maybe she didn't know how much work and focus it took and she clearly didn't see my writing, but that's progress. :)
I have had two treatments of my possible brain eating infusions so far, and no "new" symptoms have occurred. I just wish my "old" ones would go away faster. I do my therapy and take my meds, prescribed and natural, do massage, see my doctors and whatever else I can think of meanwhile trying to be patient. I am to the point where I am looking beyond how much better I get from here. Looking beyond daily discomfort and set backs. I am now looking long term, to the progression of the disease over time. Frankly, It sucks. In the back of my head I do hope for some miracle cure that will not only stop new symptoms but will reverse old ones and let me live a long normal life, but that is the dreamer in me. I, unfortunately, know my fate is wheelchairs and walkers and more difficulty swallowing and walking and probably even thinking. A friend of mine, a tattoo artist, just finished tattooing a woman's eyebrows because she has MS and just cannot maintain them anymore. Luckily, I don't "maintain" my eyebrows, probably because I don't care that much, but....you get it. Everyone has their story of someone they had to care for in the end with MS and how difficult it was.
I try and spend as much time as I can with my children and hope to be able to do more and take them more places. I want to enable them to have a normal childhood and not hold them back. I need them for their constant love (well, besides for when they hate me) and to be able for me to feel young and capable when they are around.
When it comes to my husband, I think differently. This will anger some of you, but this is how I feel. This is MY blog. Maybe my beliefs are because I have been through divorce, but I do not believe marriage is a covenant through God. Don't get me wrong, I believe in God, I live my life accordingly, and I believe he plays a great part in our lives. But marriage, I believe is a choice. I don't think my husband has made a good choice. He got shorted, ripped off, robbed. He works hard and had plans for the future and should be able to live those out. I try to convince him to. I know it sounds weird. You would think someone in my position would be begging for his love and support and promise that he will be there for me now and in my most difficult years. Part of me, though, just wants to set him free. Part so he doesn't have to be held back and part on my end so he doesn't have to watch be become what I know is my fate. So far, despite my convincing, he is still here.
I am still in the early stages, I guess, of rebuilding my sense of self. I take great pride in my life. The fact that I can care for my kids, provide them with healthy food, keep the house clean and nurture them is fulfilling to me. I have my routine of less therapy and more enjoyment during my weeks. I can enjoy my gardening, swimming occasionally, cooking good meals(on my good nights) and a nice glass of wine here and there. Then, end on the nights snuggling my kids to bed. From the outside, it looks like the perfect life. My beautiful life.
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