I've Felt Worse
One of Lynn’s regular responses when someone asks how he is doing is, “I’ve been worse.” It conveys to the person asking that he’s not feeling great but that he’s grateful he’s not feeling worse. It also allows him to avoid discussing how he really is and it shows a positive attitude, which is something that he tries to always maintain. However, it also denies the fact that he actually doesn’t feel well at all.
Several months back I challenged him on that statement. “So, if you have felt worse, does that mean you feel good now? Are you not allowed to admit that you feel horrible because you have made such progress toward feeling better?” He thought about it for a minute and admitted that he just didn’t want to confess the he didn’t feel good yet. He felt that he had been feeling bad for sooooo long that no one would want to hear that he felt bad and yes, he felt much better than he used to, so shouldn’t he feel grateful rather than complain?
I think his attitude is pretty common for those who have chronic health conditions. They get so tired of feeling lousy that they hope by ignoring how they feel; it will not be so bad--sort of like that saying, “fake it till you make it.” But does it really work to fake that you feel good when you feel like taking your next breath is too much work or if you had the choice to have your leg amputated versus dealing with the spasticity and muscle spasms every day, you would choose amputation if they could guarantee you wouldn’t have phantom pain? I don’t think you can ignore the fact that you feel that bad. You might keep it from others but you can’t keep it from yourself. If you do, then you may stop trying to get better and just give up, seeping lower and lower into depression.
Lynn and I tend to try to identity a reason for why he feels bad each time that he does… “Must be a low pressure front coming it,” “It’s the Rebif,” or “It’s pollen.” We both know that “it’s the MS” or the “hypothyroidism” or the “heavy metal detox,” but if we can attribute it to something more transient, then it might go away sooner and that’s comforting. Like everyone else, we try to fake ourselves out into believing this is not permanent.
At one point, I think Lynn had accepted that he had to feel bad forever. He was on Rebif for almost two years and felt good only one day a week because of it. He was afraid to come off the drug because he had not had any exacerbations in the two years he had used it. However, I challenged him whether having a quality of life that was the pits was really living and that maybe trying something new might be better. How could he know that he might not still have such success in managing MS if he hadn’t tried any of the newer drugs that didn’t have those same side effects? That planted a seed that I watered off and on for a few months and which grew until he was ready to try something else. The new medicine is doing so much better for him; almost no side effects at all. If he was not on the heavy metal detox, he might actually be feeling really well.
That’s another thing; the heavy metals. Though his neurologist was aware of his background in construction work, he never considered the possibility that stored up heavy metals could be contributing to his neurological damage. If not for our repeatedly asking every doctor we saw, “Why does he feel so bad,” no one would have looked for other answers. It was his dietician that figured it out. True, though he feels really awful now while he’s doing the metal detox; he knows in the long run it really should make a difference both in how he feels and how his body recovers. It won’t take away MS but maybe not all his symptoms are due to MS; maybe some of them are due to the poisons he is storing in his body. It’s certainly worth hoping for.
So now when I ask Lynn, “How do you feel today?” when I see his heavy eyelids and pale skin, he says, “I’ve felt worse,” but he says it with a smile of sarcasm and we both laugh. We know he means he feels like he was run over by a truck but that he’s looking forward to better days. We both are.
Does your employer provide workplace accommodations due to your MS?