I had another round of medical follow-up with my neurologist last week. The antibodies level and everything are still high. Thus, no chance of reducing the medications. I know steroids are cheaper, and they do control my disease really well, but they do a lot of damage as well. It sucks. My neurologist remained positive about it but she wouldn't declares that I'm into remission yet. I'm still having my "down' moments; walking around like I have an elephant resting on legs, right arm and chest. Sometimes I choked while swallowing food. Frustrating. Plus, I have to be extra careful with the spreading virus of H1N1 and don't overwhelm myself with unnecessary stress, physically or mentally. I keep telling myself I will get the hang of it and be patient. But it is just so hard because this disease is like a roller coaster to me. Some days I am more positive than others. Some days I just want to curl up on my bed and cry.
I'm not implying as if we're a subculture of some sort but no one really knows what we (people with disease) go through, unless they are one of us. Physically I looked normal but fatigue is no stranger to me. Some people thought that I was "lazy" when I chose to "just sit around". So although I know I have pushed myself (sometimes too far), others have no way of seeing that. I try not to let the comments bother me, but sometimes it still hurts to hear what others have to say. I guess I just have to get used to the fact that people aren't going to understand and try to surround myself with people that are more understanding. And speaking of understanding, I can now distinguish between "people who really understand" (they have much patience and supportive) and "people who pretends to understand" (inconsiderate and expect more of me). It's like my sixth sense. Now I only vent to certain people in my life about my disease.
Nahh, no point in getting angry. I pardoned the lack of understanding. I know Allah has some greater purpose in all of this. There will be better days eventually, when remission comes.
Therefore, those who are strong and healthy, always be thankful. If you think by being sick, people would give more attention to you, that's pathetic. If you're really think that you're sick, go get some help quickly. Why wait and keep yourself in the dark? Be careful what you wish for, Allah boleh bayar cash. Janganlah minta yang bukan-bukan.
3 comments:
temi, your decision to reduce predniselone is a wise move. my rheumatologist told me that side effect is very minimal if you consume 1 5mg pill per day. kalau 2/3 tablets, tu mmg ada side effects in long run.
he told me this cause hari tu gi inject steroid directly to my knee. sigh.
tapi betul, org selalu ingat kita ni malas, when in fact, i'm too exhausted. masa mula2 kena my dad thought i was lazy bum, cause i tire easily and sleep a lot. and now he understands, i don't blame he though
tapi hatiku masih koyak rabak with my ex (he doesn't understand at all)
just always remember your own words : I have a neuromuscular disease but that won't get me down!
people around you, they might be healthier but doesnt mean they hv a happier life.
now i do understand what it feels to be in ur shoe eventhough my condition is not as bad as yours. yet.
love u sis.. pls stay strong.
As recently as this year, I got a "it must be nice" out of somebody, because I’m sick. She thought that I can get away with anything by being sick. I heranlah dear, why some mentally-twisted individuals would literally die for extra attention. Yang sihat tubuh badan tu patut bersyukur.
hang in there okay, we love you.
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