Obviously I’ve been feeling a bit blah for the last few days. I had basically put this down to the hot-humid-rainy-muggy weather and some PMS.
The MS is making itself more known than it has for months which always makes me anxious. It’s like when you’re in a dark house alone and you hear a noise. You’re just like, “shit, what was that?”
I’m a bit obsessive compulsive about doing random checks of my neurological system. This is dumb stuff not unlike a drunk driving test (which I could legally refuse to take because of the MS which makes me worry a bit about people with MS driving ;p) Close your eyes, touch your finger to your nose, hold your hands out in front of you with your eyes closed then see if they’re in the same place when you open your eyes (it’s REALLY creepy the first time you do this and your hands AREN’T in the same place and you didn’t intentionally move them!) Raise your eyebrows, smile really wide, scowl. You’re looking for differences from one side of your body to the other.
At any rate, the neuropathy (tingling or numbness in extremities) seemed slightly worse in the last couple of days and yesterday morning I saw a distinct difference in the left side of my face. Most people’s faces are slightly asymetrical so unless a doctor sees you all the time or unless the difference is really drastic they’re probably not going to be able to see it. But I can.
None of these are serious symptoms or at all debilitating. They are just an annoying reminder that the MS is there.
My symptoms seem to be fairly closely linked to weather and any stress I am under, either physical, mental or emotional. I don’t do heat. A lot of people with MS have major trouble with cold weather. It doesn’t seem to bother me but maybe it just doesn’t get cold enough in KY for it to be a problem. We’ve had a blessedly cool summer but this last week has been horribly hot and muggy. After a few weeks of that my body seems to adjust okay but major changes in the weather almost always prompt an increase in symptoms and unfortunately the entire week is supposed to be all hot and muggy.
My own general physical health also has a major impact on symptoms. Getting a cold, flu, etc. kicks my immune system into action and it’s just wonky so it doesn’t shut off correctly. The neuropathy is almost always more pronounced during PMS weeks.
Fortunately there is no discernable weakness and I’ve been telling myself not to panic for the last two days. That it’s just the weather and the PMS and that in another week both things will ummm, clear up. I have a mental “just hang in there” chant going.
I’m sorry but the idea of a full-fledged flare-up terrifies me in a way that nothing else does. It’s just so awful to have basic control of things (like your arms and legs!) taken away from you I can’t even explain. The only things that would terrify me more would be a stroke or becoming para or quadra palegic through an accident of some sort. Death…whatever. That doesn’t freak me out. Not being able to walk…major panic attack.
I wasn’t that freakin’ stable before the MS so I’m sure you can see how even a relatively minor flare-up might throw me into something of a depression.
Today it actually seems mildly better which is actually more than likely why I’m able to write about it. I think I have some sort of weird superstition that if I talk about it I’ll make it happen. And, I don’t like discussing it with close friends/family because then they worry and it makes me feel bad that they’re worried and that I’m adding more stress to their lives. When people are all freaked out about your health it makes you even more freaked out then you were to begin with. It makes it seem more serious and then I would have to deal with people telling me I should go to the doctor.
There really isn’t anything a doctor can do for me. If the symptoms were really bad, my neurologist would want to do three days of IV Solumedrol with a ten-day dose pack of Prednisone or something after. Steroids are bad for you. Eventually the steroids themselves will cause other problems. Same with the major MS drugs on the market which do seem to help with secondary-progressive. My MS is categorized as relapsing-remitting meaning that the symptoms come and go without any permanent effects. If the symptoms were to start leaving permanent effects I would get up(or down depending on your POV)-graded to secondary-progressive. Primary-progressive is when the symptoms start off kind of bad and just get worse and worse and always leave permanent effects. Primary-progressive sucks but secondary-progressives are more likely to committ suicide I think because they’ve had a really long lead-in to think about the possibility of what permanent disability might be like.
My point is, I think I’ll stick with the problems I have rather than switching them briefly for problems as a result of drugs I might take to make them go away for a short time. Why do the people in my life need to have that explained to them every time I say that my hands are more numb than usual? Can’t they just trust that it’s my body and I’m pretty damn aware of what is going on with it and when/if the trade-off seems reasonable I’ll know that it is time to ask for the stupid steroids or the interferons or whatever?
I’m okay with the fact that science doesn’t have a viable option for me at the moment. I’m not okay with Bush preventing science from pursuing the discovery of a viable option especially since if you don’t think that if one of his drunk-assed daughters got herself knocked up he wouldn’t get her a morning-after pill or an abortion you’re living in a fantasy world.
At any rate, I know my options. I’m fairly intelligent. I want to be able to say, “my hands are a little more numb than usual and it kinda freaks me out” without having to explain, again, why I don’t want to take Solumedrol or go on insanely expensive interferons and have awful side effects.
I want to be able to say the MS is acting up and have someone say, “I’m sorry, is there anything I can do?”
Maybe I need pre-printed index cards with a list of the correct responses to various MS things since I seem to have a consistent problem with this.
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