I realized something this week. Somewhere in my subconscious, I seem to be waiting for all “this” to go away…to wake up one day and “everything” be back to normal. How odd is that?
Lynn was diagnosed with MS in 2006. We were married in 1997. I knew well before his diagnosis that he had MS even though he was repeatedly told he didn’t; that his symptoms were something else. Lynn didn’t want to have MS so he accepted that explanation; however, I’m a realist, and in my heart, I knew.
When the official call came and one of his worst fears was realized, I just received confirmation of what I “knew.” I immediately started researching what I needed to know so I could manage his care. Initially, he was more involved in putting up roadblocks to learning about his condition than in really being involved. I, however, have always faced my challenges through trying to learn more. I look to find answers in the wisdom or knowledge of others through books, articles, webinars, etc. I try to absorb all I can with the hope that the more I know, the easier it will be to cope. In many ways that works for me because as the challenges occur, I at least have a starting point on how to approach it.
That being the case, then why am I waiting for all this to go away? I realized that I keep clinging to the hope that one day a miracle will happen and he will no longer feel so tired or so incredibly bad all the time. I read about other people with MS and they go out, have fun, work, participate in family events, do advocacy work, participate in bike rides and walk-a-thons, so on and so forth. They seem to feel well and have energy though they get around using a wheelchair, cane, or walker. They say they have bad days but overall they seem to feel pretty good.
Not Lynn. He has maybe one day a week he feels pretty good. He’s pretty good on Monday, not too bad on Tuesdays usually. By Wednesday the first half of the day is okay but by afternoon he’s heading downhill. Thursday is worse, Friday is pretty bad, Saturday and Sunday just “suck.” He feels so bad today, I’m surprised he can even function.
Why does he feel so bad? We have lots of excuses. His thyroid hormones are way off. He’s slightly anemic. His Rebif shots seem to accumulate in acting as a toxin to his system as the week goes by. The combination seems to make his quality of life pretty low most of the time. It’s hard to watch him be miserable day after day after day; to watch him hope for a good day and need to accept that it’s not going to be one…again.
For me personally; if he’s having a bad day, he needs more attention. He becomes impatient; then I get annoyed and then feel guilty for being annoyed but still get that way anyway. He can’t help with any movements so I have more muscle fatigue and spasms. He needs to drink more fluid to flush out his system which means I have to cath him more (I cathed him 21 times yesterday in that 24-hour period. Needless to say, I was interrupted in whatever I was doing about every 30-45 minutes all day long). So even though he’s the one who feels bad, we are both significantly affected.
He tries not to burden me with how he feels. He tries not to ask me to do too much but when he’s like this, he really cannot even find the strength to lift his good hand to flip a switch on his peddler to turn it on; to scratch an itch behind his ear because he can’t lift his arm that high; to change the TV channel on the remote because he doesn’t have the strength to push the button, etc. If he can’t do these small things, forget feeding himself, getting dressed, shifting positions in his seat or in the bed…
When he started Rebif, he was told it should take about six months to adjust to it. He started it in April 2012. We’re still waiting on the adjustment. While he’s better than he was initially, this drug really kicks his butt. Even as bad as he feels though, he’s afraid to stop it. He has not had an exacerbation since 2010. Is that the medication? If so was Copaxone doing just as good as Rebif? That didn’t seem to be the case because he progressively got a lot worse while just taking Copaxone. If Rebif has been helping him to not lose further function is it worth feeling awful most of the time to keep it going? Maybe so if an exacerbation might take away his ability to breath on his own, or be able to see, or remember, or speak. There are a lot of really bad “loses” that can happen with MS so maybe putting up with extreme fatigue and weakness is not such a bad thing.
But I keep hoping that each day will be the day he suddenly adjusts to the medication, either the medicine for his thyroid or his anemia, or the Rebif suddenly works and he no longer feels absolutely awful. I keep waiting for that day; expecting our lives to no longer be held up by how he feels and that we can again go back out into the world and be part of it. Is it possible that could happen or is it just wishful thinking?