MS Is BS

I am so angry right now. Irritated. No, angry.

I feel so sick today. This is one of those "like I've been run over by a truck" days. And I am angry! I guess I am angry because I did not see it coming (although I did not feel well yesterday), and I just started to get over a bad one--my fatigue was down to a 7 a lot of the time, and now it is back up at a 9. No, 9.6. Not again! And I am angry, because I am so sick of it. I am so done with MS.

My burning pain has been better the last week. Level 6-8 instead of 8-10. And today it is worse. New area: my shoulders and neck! And another new place... weird... right around my bottom lip. Of course, many burning areas have been that way before.

Last night it was hard to find a comfortable position, because everything hurts. Lying on my left side is out, because my left leg and foot will begin to lose feeling and will have excruciating pain. But my right hip muscle started acting up on Friday, so lying on my right side also hurts. Both nights I tried for several hours to sleep on my own but ended up taking Ambien CR.

But I woke up throughout the night! Even drugged. That is the way is has been for a week, and it makes me nervous.

This morning I realized that, although I want to be able to sleep on my own, it is stupid not to take the medicine right away. If I take it eight hours before I need to get up, then eight hours is all the sleep I will get.. and that is not enough. Not by a long shot. I need to take the medicine right away, and hope to get 9-10 hours of sleep. I read that I should be getting 12-16 hours of rest (not all sleep, but a lot) every day while my body is trying to heal. MS in remission needs more like 10 hours. Ha, I am so not in remission.

The thing that has been disabling me the most this week has been fatigue. It is so bad that it borders on vertigo. It is hard to hold my head up. It makes me a little sick to my stomach.

When I am fatigued, my brain slows down. It is harder to pay attention. Harder to understand people. Harder to express myself. It is much easier to sit and watch, pretend I am listening. Just watching takes energy.

And that issue might be (hopefully is) why I am so sick today. Yesterday I went to a friend's birthday celebration right after church. It was a 45-minute ride--I did not drive--and a 3-hour celebration. I talked, laughed, and had fun. But I could feel myself fading. I felt like I might vomit from the fatigue, from my head spinning. By the time we left, I could barely walk. MS has taken so much. I cannot even have fun anymore.

On the way home, when I was wishing to die, I thought that I must be feeling depression. Like hm, this is worse again, maybe I do need that Cymbalta. And I realized that my emotional state truly is a result of my health. If I have a lot of pain or fatigue, I want to die. Mostly fatigue, honestly--until pain gets to a 9 or 10, fatigue is worse. But if I feel "good enough," like if my pain is 7 and my fatigue is 7, I am happy. Those times are infrequent. Honestly, my fatigue is rarely below 8 or 9.

With my sleep problem already so bad, I do not know if it is a good idea to try Cymbalta again. I am considering going to a natural food store to get empty capsules, so I can half the dose. I know that 30 mg is way too much to start on, based on my reaction last time. But... again, with my sleep being so bad, maybe it would have been bad that week even if I had not taken the Cymbalta. I will admit that the hours straight of panic and anxiety were awful, but no more awful than this burning pain. If the medicine worked for the pain, it would be worth going through the panic temporarily. It did get better after the first few days.  Taking a half dose might help me start off more gently. So I am considering trying again.

I have an appointment at the MS clinic on Friday. Ah, I just realized that I need a ride! Well, I do not NEED one, but if I have one, I will be less miserable. And less likely to get stuck in the city, too tired to drive home.

OK, so clinic appointment. It is just with Alyssa, my nurse. She and I traded some emails last week, and she told me that her mother suffers from a mysterious neurological disease that involves chronic pain. No one knows what the problem is. She understands the psychological impact of this kind of thing, on the patient and on the family. Hm. So there is a good chance that I will cry at my appointment on Friday. I cry almost every day at home, but I try not to cry outside of the house.

I suppose that all the emotional struggle makes my fatigue worse, or it certainly cannot help. But I do not know what to do about that. Would it not be bad to bottle it all up? I do not know.

Today, a really sick day, is one of those times that I am scared for the future. Scared for today. Alyssa reminded me that MS is a heavily-researched field and new treatments are coming to market, and I reminded her that they are not making anybody better. "Disabled less quickly" is considered a success. I told her that I am already hanging on my a thread, that I cannot imagine getting worse.