I'm writing this post more for myself than anyone else. In the short term, it helps me to vent about what I am going through, but it is also useful as a record I can look back on when I can't remember how long ago I had a certain test or took a certain medication. Earlier this year I created a more succinct timeline of the progression of my MS symptoms and being able to look back on what I posted really helped. Anyway . . .
I haven't been under a doctor's care since 2011-2012 so my MS is doing what it wants to do. I also stopped taking my Rebif injections around that time because all they did was make me feel worse, mainly giving me more fatigue and nausea. I don't talk about this with many people because I'm sure people would tell me that I am being reckless going without a doctor or meds. Perhaps I am. I just can't help but feel that if I started going for regular doctor visits again, it would put more strain on my family. Because I have been unemployed for the past year, ABM has been working all the extra hours he can to keep our household going. If he had to take time off work to take me to doctors and MRI appointments or pay $20-30 (one way) for me to take a Lyft ride, that would be an added burden. So I am opting to take my chances without meds.
Luckily, my symptoms have never been severe. As I type this, I am dealing with probably the most painful symptom I've had since my diagnosis, and it is not THAT bad. I started losing sensation in my left hand about a week ago, and I have been having persistent pain and numbness since then. It sounds like a contradiction to have pain and numbness at the same time, but that is what it is. It reminds me of when I've gotten frostbite (technically frostnip) in the past and then started trying to warm my hands up. It bothers me the most at night when my fingers start to throb. This is the worst numbness I've had, but I keep remembering what my old neurologist would say about these symptoms: "There's nothing we can do. It is just MS." Why would I keep paying a doctor just so he can keep track of my symptoms and tell me there is nothing that can be done? It is difficult for me to do when I know the money is needed elsewhere.
I'm hoping that the issue with my hand will fade within in another week or so; that's what happened the last time I had persistent numbness in my fingers a couple years ago. Once that is gone, all I will have to concern myself with is fighting fatigue and keeping cool. Getting overheated can be an issue for people with MS, and I am no exception. From the time I had my first episode of optic neuritis in 2004, getting overheated has caused my vision to become cloudy and stay that way for a short period. Back then it would only happen if I took a hot bath and would go away after about five minutes. Nowadays, it happens whenever I do anything that causes me to exert myself to the point that I work up a sweat, such as exercising or cleaning house in a moderately vigorous manner. Sometimes I experience dizziness or lightheadedness along with the cloudy vision and it can last for 10-15 minutes. Again, this is more of a nuisance than anything.
You can see that my symptoms are light compared to what many people have to deal with. If anything, I am the poster child for multiple sclerosis being one of the invisible diseases. Other than being a bit overweight, I look perfectly healthy. That is one of the big reasons why I wrote this post. I want to whine on Facebook or to my husband WAY more than I do, but I stop myself because I know that there are other people suffering from MS, lupus, fibromyalgia, and any number of other conditions who have worse symptoms than I do.
I don't want to be sick, but there are days where I want acknowledgment that I have a condition. I want someone to ask me if I need help instead of just assuming that I can carry that heavy box or walk a mile in the summer heat. I wish that someone understood that chores, like mopping my floors or cleaning my bathrooms, are an accomplishment because they wear me out. Doesn't everyone have those days where they wish somone would sweep in and take care of them?
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